Jo Wadham
Baby Reflex is based on the idea that applying pressure to different areas on the foot can help the body heal itself.
Reflexology, an alternative therapy based on the belief that certain parts of the foot correspond to different parts of the body, has been practised in India, Egypt and China since ancient times. Now a new course designed for babies, Baby Reflex, aims to give parents techniques for dealing with childhood problems such as colic and teething pain.Reflexologists maintain that by applying pressure to different areas on the foot, they can help the body heal itself by unblocking energy pathways.
Sceptics may wonder how pressing on a part of their foot can help their sinus problems, but while they may not be able to prove that it works, practitioners and many of their clients insist that reflexology has helped them, either in terms of relaxation or by alleviating a specific condition. In a paper published in the journal Neuroscience Letters last year, Japanese researchers said that reflexology has a physical effect on the body. Using functional magnetic resonance imaging of the brain, the researchers found that applying pressure to the zones of the foot relating to the eyes, shoulder and small intestine resulted in the stimulation of the corresponding areas of the brain. The researchers also looked at previous neurological studies carried out in relation to acupuncture. “Those results indicated that reflexology had some effects that were not simply sensory stimulation. Our results support that claim,” they said.
Jenny Lee is a chartered physiotherapist and reflexologist who spent more than 15 years working with UK doctors and children with asthma. One study, funded by Prince Charles’s Foundation for Integrated Medicine, monitored 47 asthmatic children who were given a weekly session of reflexology. “Not only was their asthma reduced, but we found some interesting side effects,” Lee says. “One was that their sleep improved. Their morning peak-flow reading [lung function test] was miles higher than usual. We also found that the children started joining in with their family’s interests and were nicer to their parents; they were bonding much more with their family.”
Spurred on by these results, Lee launched Baby Reflex in 2006. There are now Baby Reflex therapists working in Australia, Ireland, Spain, France, Turkey, Japan and the UAE.Lee says one of the advantages of reflexology over other alternative treatments such as acupuncture is that it is not painful. “Reflexology is something babies enjoy and is entirely pleasurable. It has a wonderful effect on babies. It calms and relaxes them. It’s not an ‘either/or’ with massage; they are great complementary treatments.”
According to Lee, Baby Reflex not only helps parents bond with their children, but it can also help with childhood issues such as colic, reflux and ear congestion. It also boosts the immune system. Shirley Ali trained with Lee and is now teaching Baby Reflex to small classes at The Club in Abu Dhabi. Ali is a trained aromatherapist, beauty therapist, masseuse and Reiki master and has been practising reflexology in the UK and in the UAE for more than 20 years.
Each course of classes lasts three weeks and is suitable for babies aged one month to two years. “The idea is to make it bite-sized,” Ali says, “because when you are a new mother you can’t take in as much information, and it’s not fair to keep the baby there too long.”Parents learn the reflexology techniques by practising on each other’s feet before trying the movements on their babies. “Baby reflexology works in the same way as reflexology for adults, but you have to take into account the size of the baby’s foot and the pressure you can apply,” Ali says.
Jane Miller, a Briton who has lived in Abu Dhabi for three years, has just finished a Baby Reflex course with Ali and has been using her new skills on her 10-week-old baby, Alice. Miller enrolled in the course in the hope that reflexology might help Alice’s colic, but says she knew at the very least that Alice would benefit from the relaxation aspect of the sessions. “Having experienced reflexology and knowing how lovely and relaxing it was, I wanted to do the same for Alice,” Miller says. She continues to use reflexology on Alice now that the course has finished, but there are some practical challenges. “Her feet are so small and she constantly pulls them away from me. She has tiny feet and I feel very clumsy doing it.”
Despite this, Miller thinks the reflexology may have had an effect. “She is definitely much more settled now and the colic is better. Whether this is coincidence because she is simply maturing, I don’t know, but I enjoy doing it and it’s another tool in the box.”In the first week of Ali’s course, parents are taught how to use reflexology to assist their baby’s feeding and digestion. Ali holds up diagrams of a baby’s feet with the relevant zones marked on them. Ali says one of the most helpful areas of the foot for parents to become familiar with is the calming zone just under the pad of the big toe. “Just use the knuckle of your little finger to apply a small amount of pressure, brushing down this area,” she says. Parents are also taught how to manipulate the areas relating to reflux and colic relief.
In week two, Ali explains how to help babies sleep or calm down. As well as the big toe calming zone, parents are taught the relax stroke down the inner arch of the foot from toe to heel. The final week covers general well-being. Parents learn the strokes for relieving teething pain, sinus pain, blocked ears and even insect stings. “The thing about baby reflexology is that it is portable, much more so than baby massage where you need to lie your baby down in the warmth,” Ali says. “You can do it while they are sitting in the trolley at the supermarket. If the baby is agitated or crying, you can just take their shoe off and press on the area relating to calming.”
The treatment time is brief. Ali recommends limiting each session to five minutes and not doing more than three sessions in 24 hours. Laura Dempsey, another of Ali’s students, agrees that the ease with which you can do reflexology is appealing. She has just returned from a trip home to the UK with her 15-week-old son, Hugo. “It was really useful in the plane,” says Dempsey, who lives in Abu Dhabi with her husband and two other children, aged three and two. “I did the calming one on the flight and he didn’t cry too much. It’s better than resorting to chemical medication.”
Dempsey, like Miller, was drawn to the course partly as a result of her positive experiences with reflexology treatments. “I had reflexology with Shirley when I was pregnant with Hugo,” she says. “I had a bad back, but the reflexology cleared it for the rest of my pregnancy. Reflexology is good for making you feel in balance. I came out feeling less heavy and more aligned.”She decided to try it on her baby. “I thought if I enjoy it, maybe he will, and maybe there is something in it. It’s a nice social time, too, to meet other mums with kids of similar ages and similar problems.”
Lee hopes to launch a new course for toddlers soon. “Once they are more mobile, we work on their hands,” she says. “We focus on different parts of the body using different nursery rhymes.” The apparent benefits of reflexology on young children continue to be shown. One Baby Reflex therapist in Ireland has noted improvements in children with cerebral palsy who have weekly reflexology sessions, and has started working with physiotherapists to develop this. As Lee says: “The research is only the beginning.”
For more information visit the www.babyreflex.co.uk or e-mail infoshirleypurly@hotmail.com.
Showing posts with label baby. Show all posts
Showing posts with label baby. Show all posts
22 December 2009
01 December 2009
Mother hails Blind School's help as son wins design
A BLIND boy whose life has been transformed by an Edinburgh school will have a Christmas card he designed delivered to the world's most famous people.
Nine-year-old Ben Wilson lost his sight and was severely brain damaged after a 16-hour fit as a six-month-old baby.
Over the years his parents Jenny and Neil wondered what quality of life he would have, but said the past three months at the city's Royal Blind School had turned his fortunes around.
The pinnacle of this so far was when he won a Christmas card competition run by Edinburgh South MP Nigel Griffiths, who will send it to the likes of US president Barack Obama, former leader Bill Clinton and Nelson Mandela.
Ben, who lives at the Newington school during the week and returns home to north Tyneside at weekends, may have the potential to gain some independence thanks to the work of the school.
Jenny, 39, said: "We tried for a good while to get him into the school, and I have to say the amazing reputation it has is dead right. Even though he has only been there for a few months, the difference is there to be seen."
Doctors said when Mrs Wilson awoke randomly eight years ago she might well have prevented the cot death of Ben.
She woke at 5am and carried him downstairs, and then the seizure happened.
"Call it mother's instinct if you will," she added. "I knew something was wrong.
"In hospital we were basically told his brain was like a scrambled egg, and anything he was able to do was a bonus. But since he's been in Edinburgh he has learned so much. He can help me with washing dishes. He is in a wheelchair but one day we hope he can get a powered one which would give him some more independence."
Although the benefits for his wellbeing of being at the school are clear, Mrs Wilson added that it could at times be difficult for her and her accountant husband, 43.
"We knew he had to go there," she said. "He was getting very frustrated with life and this has helped. He is calmer and happier, every night there is something to do at the school which is something I couldn't do as a mother of two other children.
"But it can be hard, when we speak to him or the school and hear what he has been doing we sometimes think we would have liked to have done that with him, or seen him do it."
Mr Griffiths, who met and congratulated Ben on Saturday, said: "The school is among the best of its kind in the world, and that is said by people from around the world. Whenever I go there I am asked deeper, more challenging questions by the pupils than I get from those at George Watson's or Heriot's."
"The work they do is terrific, and the result of Ben's design going to 6,000 people around the world who are on my Christmas card list, including Gordon Brown and Barack Obama, is testament to what can be achieved."
Nine-year-old Ben Wilson lost his sight and was severely brain damaged after a 16-hour fit as a six-month-old baby.
Over the years his parents Jenny and Neil wondered what quality of life he would have, but said the past three months at the city's Royal Blind School had turned his fortunes around.
The pinnacle of this so far was when he won a Christmas card competition run by Edinburgh South MP Nigel Griffiths, who will send it to the likes of US president Barack Obama, former leader Bill Clinton and Nelson Mandela.
Ben, who lives at the Newington school during the week and returns home to north Tyneside at weekends, may have the potential to gain some independence thanks to the work of the school.
Jenny, 39, said: "We tried for a good while to get him into the school, and I have to say the amazing reputation it has is dead right. Even though he has only been there for a few months, the difference is there to be seen."
Doctors said when Mrs Wilson awoke randomly eight years ago she might well have prevented the cot death of Ben.
She woke at 5am and carried him downstairs, and then the seizure happened.
"Call it mother's instinct if you will," she added. "I knew something was wrong.
"In hospital we were basically told his brain was like a scrambled egg, and anything he was able to do was a bonus. But since he's been in Edinburgh he has learned so much. He can help me with washing dishes. He is in a wheelchair but one day we hope he can get a powered one which would give him some more independence."
Although the benefits for his wellbeing of being at the school are clear, Mrs Wilson added that it could at times be difficult for her and her accountant husband, 43.
"We knew he had to go there," she said. "He was getting very frustrated with life and this has helped. He is calmer and happier, every night there is something to do at the school which is something I couldn't do as a mother of two other children.
"But it can be hard, when we speak to him or the school and hear what he has been doing we sometimes think we would have liked to have done that with him, or seen him do it."
Mr Griffiths, who met and congratulated Ben on Saturday, said: "The school is among the best of its kind in the world, and that is said by people from around the world. Whenever I go there I am asked deeper, more challenging questions by the pupils than I get from those at George Watson's or Heriot's."
"The work they do is terrific, and the result of Ben's design going to 6,000 people around the world who are on my Christmas card list, including Gordon Brown and Barack Obama, is testament to what can be achieved."
11 November 2009
Cord Blood Reverses Cerebral Palsy in Colorado Girl - Incredible Health - FOXNews.com
Chloe Levine was born seemingly perfect — she was the happy and healthy baby her parents had dreamed of.
But by the time she was 9 months old, Chloe was not reaching the milestones her older sister Shayla had met at that age.
Cord Blood Reverses Cerebral Palsy in Colorado Girl - Incredible Health - FOXNews.com
But by the time she was 9 months old, Chloe was not reaching the milestones her older sister Shayla had met at that age.
Cord Blood Reverses Cerebral Palsy in Colorado Girl - Incredible Health - FOXNews.com
05 November 2009
The heartbreaking case of Baby RB
I understand the mother’s desire to protect Baby RB - but doctors, after all, can be wrong, writes Liz Hunt.
By Liz HuntPublished: 6:53AM GMT 04 Nov 2009
It’s a tug-of-love case like no other. In one corner is a mother who wants her baby son to die. She believes it will save him from a life of suffering caused by a rare neuromuscular condition that means he may never move independently, and requires assistance to breathe. In the other is a father who wants the child to be given a chance, at least, of life.
In the middle sits a judge who, once lawyers, ethicists, and medics have had their say, must pronounce on Baby RB’s future. Surely Solomon had an easier decision than that faced by Mr Justice McFarlane.
For those observing this High Court drama who are swayed neither by religious belief, nor by a faith in the absolutism of medical opinion that holds Baby RB as a lost cause for whom a humane exit is the only option, it’s a tortuous intellectual and emotional debate.
I find myself ricocheting between the two positions, both of them informed by awareness of the long hours the devoted parents have spent at the child’s bedside in the 13 months since his birth. His mental development is believed to be unimpaired; the court heard yesterday claims that he responds to those around him, will wriggle his body in pleasure, and can interact with toys or when stories are read to him.
By Liz HuntPublished: 6:53AM GMT 04 Nov 2009
It’s a tug-of-love case like no other. In one corner is a mother who wants her baby son to die. She believes it will save him from a life of suffering caused by a rare neuromuscular condition that means he may never move independently, and requires assistance to breathe. In the other is a father who wants the child to be given a chance, at least, of life.
In the middle sits a judge who, once lawyers, ethicists, and medics have had their say, must pronounce on Baby RB’s future. Surely Solomon had an easier decision than that faced by Mr Justice McFarlane.
For those observing this High Court drama who are swayed neither by religious belief, nor by a faith in the absolutism of medical opinion that holds Baby RB as a lost cause for whom a humane exit is the only option, it’s a tortuous intellectual and emotional debate.
I find myself ricocheting between the two positions, both of them informed by awareness of the long hours the devoted parents have spent at the child’s bedside in the 13 months since his birth. His mental development is believed to be unimpaired; the court heard yesterday claims that he responds to those around him, will wriggle his body in pleasure, and can interact with toys or when stories are read to him.
So, yes, I understand the mother’s desire to protect him. A peaceful, drug-soothed death is surely preferable to the “pitiful existence” experts say lies ahead. But how hard it is not to sympathise with the father’s refusal to deny his child an existence at all by withdrawing ventilation, as the doctors want. Doctors can, after all, be wrong.
This is not the first time that a court has been asked to decided whether a very disabled child should live or die. In 2004, in the first case of its kind, 10-month-old Charlotte Wyatt’s life was the focus of a high-profile legal battle. Born at 26 weeks, her brain was under-developed and her hearts and lungs damaged so that she had to be supplied with oxygen. Doctors wanted to let her die, rather than resuscitate her, as they had done five times previously when her breathing failed. Blind and deaf, her suffering had reached “an unbearable level”. Her chance of surviving another year was “approximately zero”.
Charlotte’s parents disputed this assessment. They said their daughter enjoyed cuddles, reacted to her musical toys, and loved to be bathed. In short, they felt she had a worthwhile quality of life, and every intervention should be made to prolong it. A judge ruled in favour of the doctors and a do-not-resuscitate order was put in place. In the event, it was not needed, Charlotte survived, confounding the experts. It was a triumph over tragedy – of sorts. Her parents split up, and she is now believed to be in the care of foster parents.
There are similarities between the cases: the damning medical prognosis, the insistence that the baby’s life is not without comfort. But there is also a fundamental difference: should the judge find in favour of his mother, and of the NHS trust that cares for Baby RB, it will be the first time that a British court has ruled against the wishes of a parent (the baby’s father) whose child does not have brain damage.
This is the fulcrum on which the debate pivots. Michael McClonas, for the NHS trust, has argued that Baby RB’s “awareness” will make his plight unbearable, “not so much now, but as he gets older and catches glimpses of what others can do”. What dangerous presumption that statement contains; that a child should be helped to die because of what might lie ahead, that his very sentience might seal his fate.
To how many others might that argument have been applied: The late writer and cerebral palsy sufferer Christy Nolan? Perhaps even Professor Stephen Hawking, who developed a debilitating illness in early adulthood? I am not an advocate of life at any price, but Baby RB’s is worth more than this.
15 October 2009
Rett Syndrome most disabling of all the autistic disorders
To the Editor:
Cumberland Times-News
I am writing, hoping you will help raise awareness about Rett Syndrome. It’s the leading cause of severe impairment in girls, yet the general public still doesn’t know about it. A baby girl is born every five hours with this debilitating disease.
Imagine: symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders ... all in one little girl.
Our family does not have to imagine this, we are living it. My 21-year-old daughter Amanda was diagnosed with Rett Syndrome in February 1991.
Rett Syndrome is the most physically disabling disorder of the autism-spectrum disorders.
However, it’s the only autism-spectrum disorder with a known genetic cause. Primarily affecting girls, Rett Syndrome often strikes just after they have learned to walk, speak few words, and begins to drag their development backward.
This debilitating syndrome includes symptoms seen in many other severe neurological and neuropsychiatric disorders on which Rett research may shed light.
These include many of the following: regression, loss of speech, motor control and functional hand use; orthopedic problems including scoliosis and osteopenia; impaired cardiac, circulatory and digestive functions; autonomic instability and sleep disturbances; many varieties of seizures, often untreatable; autistic behaviors and sensory issues; Parkinsonian tremors; dystonia; anxiety and apraxia.
Currently, there are no effective treatments for Rett Syndrome. Most girls survive into adulthood and require total, 24-hour care. As of now there is no cure.
But, by raising awareness and continuing to fund research projects, we may be able to make a difference in the lives of girls with Rett Syndrome, and their families.
In 2007 the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late-stage disease.
Days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks.
This singular achievement has catapulted Rett into new realms of possibility and positions Rett Syndrome to be the first curable childhood neurological disorder. Rett Syndrome, unlike so many disorders (autism, Alzheimer’s, Parkinson, MS, etc.) has unique advantages: a known cause (a gene, known as MECP2), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.
There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.
As printed in a www.eurekalert.org/
pub_releases/2009-09/irsf-iaf092109.php public release announcement:
On Sept. 21, 2009, the International Rett Syndrome Foundation announced that it will provide $200,000 in 2009 to support a newly proposed clinical trial with a growth-factor based treatment for Rett Syndrome.
The study will be carried out by a team of clinical trials specialists at the Boston Children’s Hospital, led by Dr. Omar Khwaja MD, PhD and will be the first potentially disease modifying therapy ever to be tested in Rett Syndrome patients. Investigators will test a drug called Increlex.
“We are pleased to announce the funding of this groundbreaking new clinical study which presents a novel therapeutic strategy for the treatment of Rett Syndrome” said Dr. Antony Horton chief scientific officer at the International Rett Syndrome Foundation.
“This study will be carried out by a collaborative network of leading clinicians and neuroscientists in some of the World’s most prestigious research institutes at the cutting edge of biomedical research. Through our funding of this study we demonstrate our commitment to moving forward the most advanced treatments to prevent, treat and ultimately reverse Rett syndrome,” he said.
Ronna Reid
Rawlings
Cumberland Times-News
I am writing, hoping you will help raise awareness about Rett Syndrome. It’s the leading cause of severe impairment in girls, yet the general public still doesn’t know about it. A baby girl is born every five hours with this debilitating disease.
Imagine: symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders ... all in one little girl.
Our family does not have to imagine this, we are living it. My 21-year-old daughter Amanda was diagnosed with Rett Syndrome in February 1991.
Rett Syndrome is the most physically disabling disorder of the autism-spectrum disorders.
However, it’s the only autism-spectrum disorder with a known genetic cause. Primarily affecting girls, Rett Syndrome often strikes just after they have learned to walk, speak few words, and begins to drag their development backward.
This debilitating syndrome includes symptoms seen in many other severe neurological and neuropsychiatric disorders on which Rett research may shed light.
These include many of the following: regression, loss of speech, motor control and functional hand use; orthopedic problems including scoliosis and osteopenia; impaired cardiac, circulatory and digestive functions; autonomic instability and sleep disturbances; many varieties of seizures, often untreatable; autistic behaviors and sensory issues; Parkinsonian tremors; dystonia; anxiety and apraxia.
Currently, there are no effective treatments for Rett Syndrome. Most girls survive into adulthood and require total, 24-hour care. As of now there is no cure.
But, by raising awareness and continuing to fund research projects, we may be able to make a difference in the lives of girls with Rett Syndrome, and their families.
In 2007 the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late-stage disease.
Days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks.
This singular achievement has catapulted Rett into new realms of possibility and positions Rett Syndrome to be the first curable childhood neurological disorder. Rett Syndrome, unlike so many disorders (autism, Alzheimer’s, Parkinson, MS, etc.) has unique advantages: a known cause (a gene, known as MECP2), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.
There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.
As printed in a www.eurekalert.org/
pub_releases/2009-09/irsf-iaf092109.php public release announcement:
On Sept. 21, 2009, the International Rett Syndrome Foundation announced that it will provide $200,000 in 2009 to support a newly proposed clinical trial with a growth-factor based treatment for Rett Syndrome.
The study will be carried out by a team of clinical trials specialists at the Boston Children’s Hospital, led by Dr. Omar Khwaja MD, PhD and will be the first potentially disease modifying therapy ever to be tested in Rett Syndrome patients. Investigators will test a drug called Increlex.
“We are pleased to announce the funding of this groundbreaking new clinical study which presents a novel therapeutic strategy for the treatment of Rett Syndrome” said Dr. Antony Horton chief scientific officer at the International Rett Syndrome Foundation.
“This study will be carried out by a collaborative network of leading clinicians and neuroscientists in some of the World’s most prestigious research institutes at the cutting edge of biomedical research. Through our funding of this study we demonstrate our commitment to moving forward the most advanced treatments to prevent, treat and ultimately reverse Rett syndrome,” he said.
Ronna Reid
Rawlings
11 October 2009
Cody Holloway's attitude drives him, not his disability
By Nancy Badertscher
The Atlanta Journal-Constitution
1:34 p.m. Saturday, October 10, 2009
Cody Holloway travels the halls of his Sandy Springs high school in a motorized wheelchair.
“The real deal on wheels,” says the sign on the back.
That combination — chair and slogan, disability and attitude — tells you something important about Cody, 14. Children with cerebral palsy may or may not think about the future in a different way from children without it. But in Cody’s case, they run for class president.
“Believe it or not, it actually started out as a joke,” Cody said recently.
Maybe so, but the idea took hold. It was last year in Jennifer Macke’s eighth-grade science class at Ridgeview Charter School that students sat pondering major milestones that might be reached by the time they celebrate their 100th birthdays.
Each student’s timeline was discussed, and when they got to President of the United States Cody Holloway, all of the class “loved it,” Macke said.
And last month he was elected ninth-grade class president at Fulton County’s Riverwood International Charter School.
“If Cody had said he was going to rule the world, I would have said: ‘That sounds about right,’ ” Macke said. “He’s certainly not one to let his disabilities hold him back in any way, shape or form.”
Cody navigates the halls in his wheelchair. A full-time aide at school helps him maneuver through crowded class changes, scribe his answers on standardized tests and interpret his labored speech, especially first meetings.
As candidate for class president, Cody billed himself “the real deal on wheels” and vowed to be “a voice” for students with teachers and faculty.
But he had more than a catchy slogan. His classroom aide, Brady Radford, was his strategist and helped take the campaign to Facebook. His dad had the title of campaign manager but insists he was strictly on the sidelines.
“He did his own thing, and I got out of the way,” Jeff Holloway said.
Two teachers pitched in so his televised message to voters was closed-captioned, bringing clarity to some of Cody’s pronunciations.
Whizzing around in his chair with “the real deal” slogan on the back, Cody solicited votes up-close from classmates, many of whom he knew in middle school.
“He decided since he drives this baby everywhere, why not use it as rolling advertising,” Radford said with a hand on Cody’s wheelchair.
Cody keeps up — especially with news and sports. As a candidate, he promised to keep his classmates abreast of the latest at school and in the community.
Students, like friend and fellow ninth-grader William Cormier, rallied behind him.
“He’s really friendly with everybody,” William said. “He also was very determined.”
Hannahkohl Almire said she watched Cody’s televised campaign speech and was impressed. She also liked his “real deal” slogan. “It was really cute,” she said.
Elections for class president were held in early September. Cody was declared the winner for the ninth grade, though the actual vote counts are never revealed.
“The biggest part was for students to realize that Cody’s cerebral palsy didn’t affect his mental abilities, only his communication and mobility,” said Joel Kadish, a Riverwood teacher and the faculty sponsor for student government.
The win was no surprise to Cody’s mom, dad, brother and sister. “We expect him to do good,” his dad said. “[He] quickly becomes Mr. Popular” wherever he goes.
Cody, who blogs on his beloved Detroit Red Wings and the Crimson Tide, ponders new places he might go — new what-ifs along his timeline. There’s nothing serious in it about himself as U.S. president, but Cody said he would like see one more “open to the needs of the disabled.”
Cody wants to be a sportswriter.
“He told me that all he wants is for everyone to see that just because someone has a disability doesn’t mean that they are not capable of being successful. They just have to work a little harder sometimes,” Cody’s dad said.
The Atlanta Journal-Constitution
1:34 p.m. Saturday, October 10, 2009
Cody Holloway travels the halls of his Sandy Springs high school in a motorized wheelchair.
“The real deal on wheels,” says the sign on the back.
That combination — chair and slogan, disability and attitude — tells you something important about Cody, 14. Children with cerebral palsy may or may not think about the future in a different way from children without it. But in Cody’s case, they run for class president.
“Believe it or not, it actually started out as a joke,” Cody said recently.
Maybe so, but the idea took hold. It was last year in Jennifer Macke’s eighth-grade science class at Ridgeview Charter School that students sat pondering major milestones that might be reached by the time they celebrate their 100th birthdays.
Each student’s timeline was discussed, and when they got to President of the United States Cody Holloway, all of the class “loved it,” Macke said.
And last month he was elected ninth-grade class president at Fulton County’s Riverwood International Charter School.
“If Cody had said he was going to rule the world, I would have said: ‘That sounds about right,’ ” Macke said. “He’s certainly not one to let his disabilities hold him back in any way, shape or form.”
Cody navigates the halls in his wheelchair. A full-time aide at school helps him maneuver through crowded class changes, scribe his answers on standardized tests and interpret his labored speech, especially first meetings.
As candidate for class president, Cody billed himself “the real deal on wheels” and vowed to be “a voice” for students with teachers and faculty.
But he had more than a catchy slogan. His classroom aide, Brady Radford, was his strategist and helped take the campaign to Facebook. His dad had the title of campaign manager but insists he was strictly on the sidelines.
“He did his own thing, and I got out of the way,” Jeff Holloway said.
Two teachers pitched in so his televised message to voters was closed-captioned, bringing clarity to some of Cody’s pronunciations.
Whizzing around in his chair with “the real deal” slogan on the back, Cody solicited votes up-close from classmates, many of whom he knew in middle school.
“He decided since he drives this baby everywhere, why not use it as rolling advertising,” Radford said with a hand on Cody’s wheelchair.
Cody keeps up — especially with news and sports. As a candidate, he promised to keep his classmates abreast of the latest at school and in the community.
Students, like friend and fellow ninth-grader William Cormier, rallied behind him.
“He’s really friendly with everybody,” William said. “He also was very determined.”
Hannahkohl Almire said she watched Cody’s televised campaign speech and was impressed. She also liked his “real deal” slogan. “It was really cute,” she said.
Elections for class president were held in early September. Cody was declared the winner for the ninth grade, though the actual vote counts are never revealed.
“The biggest part was for students to realize that Cody’s cerebral palsy didn’t affect his mental abilities, only his communication and mobility,” said Joel Kadish, a Riverwood teacher and the faculty sponsor for student government.
The win was no surprise to Cody’s mom, dad, brother and sister. “We expect him to do good,” his dad said. “[He] quickly becomes Mr. Popular” wherever he goes.
Cody, who blogs on his beloved Detroit Red Wings and the Crimson Tide, ponders new places he might go — new what-ifs along his timeline. There’s nothing serious in it about himself as U.S. president, but Cody said he would like see one more “open to the needs of the disabled.”
Cody wants to be a sportswriter.
“He told me that all he wants is for everyone to see that just because someone has a disability doesn’t mean that they are not capable of being successful. They just have to work a little harder sometimes,” Cody’s dad said.
19 September 2009
DOUBLE WISH
Baby hospice seeks top spot
ZOE’S Place is determined to clinch the double by being top of the table again at the end of this year’s Wish campaign.
And with only five days to go to register it won’t be long until the tokens start mounting up.
Last year the baby hospice in Normanby collected a staggering 143,830 tokens to take home £1,403.62.
“It was the cutting and sticking I remember, we went through a lot of Pritt Sticks, it was all hands on deck,” said fundraiser Sue Fox, who is ready to do it all again and hopefully raise even more money.
Chief executive Mark Guidery said the 2008 Wish funding was used to buy a standing frame to assist youngsters who struggle to stand while they have physiotherapy.
“It’s a very expensive, specialised piece of equipment,” he said. “Without the money from Wish we would have had to sacrifice something else to buy it.”
Mrs Fox said: “We have 55 families that regularly access Zoe’s Place so we need every penny we can get.
“We know it’s difficult at the moment because of the current financial climate, a lot of people find it hard to find that extra pound to give to charity, so something like the Wish appeal is brilliant for us.”
Zoe’s Place is a home from home for babies who have life-limiting illnesses and complex needs.
It offers palliative and respite care for babies and infants from birth to five years old and can take up to six youngsters at any one time.
For the parents who need to take advantage of its services it provides a vital lifeline.
Jenny Landess, 24, of Linthorpe whose son Josh McMahon,has cerebral palsy, said she would be getting all her friends and family to collect tokens for the baby hospice which has done so much for her son.
“Zoe’s Place is absolutely excellent. They are lifesavers. It’s so good to get some respite. It costs £850,000 a year to run so every little helps.” Mike Farrell, 41, of Marton, whose daughter Megan has cerebral palsy, said: “Zoe’s Place is absolutely fantastic especially with Megan. She suffered another seizure a couple of weeks ago while she was at Zoe’s Place and the staff handled it perfectly.
“When you go into a place like this you realise how dedicated and professional the staff are - it’s a place that really deserves as much as we can give them. I would urge people to get behind Zoe’s Place, the more money it gets the better.”
This year the Wish campaign has £30,000 to give away - the more tokens the baby hospice collects the more money it will walk away with.
To support Zoe’s Place send your Wish tokens to: Zoe’s Place Baby Hospice, Crossbeck House, High Street, Normanby, Middlesbrough, TS6 9DA
ZOE’S Place is determined to clinch the double by being top of the table again at the end of this year’s Wish campaign.
And with only five days to go to register it won’t be long until the tokens start mounting up.
Last year the baby hospice in Normanby collected a staggering 143,830 tokens to take home £1,403.62.
“It was the cutting and sticking I remember, we went through a lot of Pritt Sticks, it was all hands on deck,” said fundraiser Sue Fox, who is ready to do it all again and hopefully raise even more money.
Chief executive Mark Guidery said the 2008 Wish funding was used to buy a standing frame to assist youngsters who struggle to stand while they have physiotherapy.
“It’s a very expensive, specialised piece of equipment,” he said. “Without the money from Wish we would have had to sacrifice something else to buy it.”
Mrs Fox said: “We have 55 families that regularly access Zoe’s Place so we need every penny we can get.
“We know it’s difficult at the moment because of the current financial climate, a lot of people find it hard to find that extra pound to give to charity, so something like the Wish appeal is brilliant for us.”
Zoe’s Place is a home from home for babies who have life-limiting illnesses and complex needs.
It offers palliative and respite care for babies and infants from birth to five years old and can take up to six youngsters at any one time.
For the parents who need to take advantage of its services it provides a vital lifeline.
Jenny Landess, 24, of Linthorpe whose son Josh McMahon,has cerebral palsy, said she would be getting all her friends and family to collect tokens for the baby hospice which has done so much for her son.
“Zoe’s Place is absolutely excellent. They are lifesavers. It’s so good to get some respite. It costs £850,000 a year to run so every little helps.” Mike Farrell, 41, of Marton, whose daughter Megan has cerebral palsy, said: “Zoe’s Place is absolutely fantastic especially with Megan. She suffered another seizure a couple of weeks ago while she was at Zoe’s Place and the staff handled it perfectly.
“When you go into a place like this you realise how dedicated and professional the staff are - it’s a place that really deserves as much as we can give them. I would urge people to get behind Zoe’s Place, the more money it gets the better.”
This year the Wish campaign has £30,000 to give away - the more tokens the baby hospice collects the more money it will walk away with.
To support Zoe’s Place send your Wish tokens to: Zoe’s Place Baby Hospice, Crossbeck House, High Street, Normanby, Middlesbrough, TS6 9DA
05 September 2009
New stretching technique debuts in valley
Active Isolated Stretching has had impact across nation
Stretching has long been considered an important part of maintaining a limber and healthy body. However, most men and women, whether they are pro athletes or an average exerciser, neglect stretching. In addition, how one should stretch is a constantly changing issue.
Working thousands of hours to develop a foolproof stretching method, Aaron Mattes, a registered kinesiotherapist and a licensed massage therapist, created Active Isolated Stretching, or AIS.
"I heard about Aaron through a friend of mine who had tennis elbow," said Sun Valley resident Kiril Sokoloff. "I was told Koby Bryant goes to Aaron after every game for four hours."
Sokoloff said Mattes is an extraordinary physical therapist and has a passion for healing. Mattes' method is used by professional and top athletes, and has been adopted by physical therapists and trainers at Zenergy at Thunder Spring.
"It is active isolated stretching, which is very focused on breathing," said AIS-certified therapist Winston Purkiss. "It is a short stretch hold of no more than two seconds. This is the most effective stretching method ever introduced to me."
Purkiss said Mattes is based in Florida and his AIS method came to Sun Valley because of Sokoloff.
"The method has received a research grant by the National Institutes of Health," said Purkiss. "My wife had a stroke and was unable to use her right arm. Sokoloff flew her to Florida to meet Aaron and she was able to drink from a glass. It is not a miracle cure, but it is a method that continues to be effective."
The AIS method is about movement. Mattes created stretches for people to do alone and with a therapist. The AIS method is in a book for $35 available at Mattes' Web site, stretchingusa.com. In addition, Mattes has a variety of inexpensive materials and stretching apparatus available on the Web site.
"You feel more energy through this method of stretching because of the oxygen going through the body to the tissues,; Purkiss said.; AIS helps Parkinson's disease patients, people who are wheelchair bound, stroke patients, people with bunion problems, people with cerebral palsy and those who have had replacement surgery for hips and knees."
Sokoloff is working on bringing Mattes to Sun Valley next June to expose more people to AIS and to do a full training seminar presented by Zenergy.
Lots of people in the valley do a lot of running, biking and a great deal of exercise and need to stretch properly," Sokoloff said. "My wife is pregnant, and she has been doing AIS and has not had any pain. We plan to have work done on our baby too. I believe in AIS. Young children can advance mentally and physically with stretching."
Valley resident Pat Schott, 45, is a full-time painter and avid cyclist. He said he was suffering from back pain and hamstring issues and was almost crippled when he ran into AIS therapist Diane Calvero. Calvero gave Schott AIS sessions at Zenergy, which sold him on the benefits of stretching.
Schott enjoys cyclocross racing and mountain biking; during cyclocross season he is racing every weekend. He said he is up and down ladders all day and the combination of his job and cycling does not do well for the body.
"It's the same breathing as yoga but different," Schott said. "AIS is quick and the results are immediate. I highly recommend AIS."
Appointments for AIS sessions can by made at Zenergy. They cost $85 for members and $100 for non-members. To make an appointment, call Personal Services Manager Mollie Holt at 725-0595, ext. 124.
Stretching has long been considered an important part of maintaining a limber and healthy body. However, most men and women, whether they are pro athletes or an average exerciser, neglect stretching. In addition, how one should stretch is a constantly changing issue.
Working thousands of hours to develop a foolproof stretching method, Aaron Mattes, a registered kinesiotherapist and a licensed massage therapist, created Active Isolated Stretching, or AIS.
"I heard about Aaron through a friend of mine who had tennis elbow," said Sun Valley resident Kiril Sokoloff. "I was told Koby Bryant goes to Aaron after every game for four hours."
Sokoloff said Mattes is an extraordinary physical therapist and has a passion for healing. Mattes' method is used by professional and top athletes, and has been adopted by physical therapists and trainers at Zenergy at Thunder Spring.
"It is active isolated stretching, which is very focused on breathing," said AIS-certified therapist Winston Purkiss. "It is a short stretch hold of no more than two seconds. This is the most effective stretching method ever introduced to me."
Purkiss said Mattes is based in Florida and his AIS method came to Sun Valley because of Sokoloff.
"The method has received a research grant by the National Institutes of Health," said Purkiss. "My wife had a stroke and was unable to use her right arm. Sokoloff flew her to Florida to meet Aaron and she was able to drink from a glass. It is not a miracle cure, but it is a method that continues to be effective."
The AIS method is about movement. Mattes created stretches for people to do alone and with a therapist. The AIS method is in a book for $35 available at Mattes' Web site, stretchingusa.com. In addition, Mattes has a variety of inexpensive materials and stretching apparatus available on the Web site.
"You feel more energy through this method of stretching because of the oxygen going through the body to the tissues,; Purkiss said.; AIS helps Parkinson's disease patients, people who are wheelchair bound, stroke patients, people with bunion problems, people with cerebral palsy and those who have had replacement surgery for hips and knees."
Sokoloff is working on bringing Mattes to Sun Valley next June to expose more people to AIS and to do a full training seminar presented by Zenergy.
Lots of people in the valley do a lot of running, biking and a great deal of exercise and need to stretch properly," Sokoloff said. "My wife is pregnant, and she has been doing AIS and has not had any pain. We plan to have work done on our baby too. I believe in AIS. Young children can advance mentally and physically with stretching."
Valley resident Pat Schott, 45, is a full-time painter and avid cyclist. He said he was suffering from back pain and hamstring issues and was almost crippled when he ran into AIS therapist Diane Calvero. Calvero gave Schott AIS sessions at Zenergy, which sold him on the benefits of stretching.
Schott enjoys cyclocross racing and mountain biking; during cyclocross season he is racing every weekend. He said he is up and down ladders all day and the combination of his job and cycling does not do well for the body.
"It's the same breathing as yoga but different," Schott said. "AIS is quick and the results are immediate. I highly recommend AIS."
Appointments for AIS sessions can by made at Zenergy. They cost $85 for members and $100 for non-members. To make an appointment, call Personal Services Manager Mollie Holt at 725-0595, ext. 124.
28 August 2009
BUNGEE ROPES HELPED MY DAUGHTER TO WALK
Footsteps therapy uses trampolines to help get confidence back
Tuesday August 25,2009
Minty Hoyer Millar, 17, who has cerebral palsy, has become mobile with the aid of a strange device called the spider. Her mother Pip, 49, tells her story
Minty was my fourth child so I was aware she was not progressing as she should. I saw she was struggling to achieve the usual baby and toddler milestones. At 12 months she was assessed and we were told she was physically and mentally handicapped and would never achieve beyond the capabilities of a four–year-old. I was devastated.
Doctors weren’t sure what was wrong. Cerebral palsy, a neurological disorder affecting balance and movement was confirmed when Minty was 22 months old. I learned it leaves sufferers with little or no mobility. We were told we’d have to wait more than a year to see an NHS physiotherapist. I researched the condition to see what other help was available but it became clear we would have to do all the work to make sure she had the best life possible.
‘It gives kids a confidence boost'
As Minty got older she was very floppy. By the time she was nine she could only crawl. She couldn’t stand, had no balance and very little speech.
I felt sad when I looked at her. I wanted her to be part of everything but she couldn’t. It was frustrating and upsetting because I knew from day one that she could achieve much more. With three other children, William now 22, Thomas, 20, and Henry, 19, we just had get on with it.
I spent my spare time finding out more about treatments around the world. I heard about a therapy called Footsteps in the city of Koszalin, north-west Poland. It uses exercises that focus on improving movements such as rolling over, supporting, reaching, grasping and holding.
It also teaches patients to shift their body weight and move from one place to another, enabling greater mobility and independence and encouraging increased self-confidence. All sorts of apparatus including balls, rolls, trampolines and ladders are used. We begain travelling to Poland every other month and after a year Minty was more mobile and happier.
There we discovered a device called the spider. It is a frame with bungee ropes attached which holds the child in place while physiotherapists work on improving their muscle strength and posture. It looks like a giant spider’s web.
By supporting Minty in an upright position it allowed her to move independently. Therapists could put her body through various exercises in different positions so it could be aligned properly. This helped develop her balance. It was great fun and she enjoyed it a lot.
With it she learned to stand independently and walk a little bit. Stimulating so many different muscle groups even helped her speech.
I couldn’t help thinking it was a huge shame that so many others in the UK were missing out on the opportunity Minty had. Then in 2004, when Minty was 12, my husband Christian suggested we set up our own Footsteps centre in an outbuilding at our home in South Warborough, Oxfordshire, so that others could use the spider. I was excited about the idea. Eventually we persuaded two amazing physiotherapists Filip and Gosia to come over from Poland to work with us.
When children use the spider it can be the first time they have stood upright. It gives them a huge confidence boost and the therapists can try lots of exercises with them.
They have a new sense of freedom. The spider helps with stability and balance and the children love playing games like catching balls while using it.
Last year we set up the Footsteps Foundation charity to help families who can’t afford the treatment, which costs about £1,800 for a three-week course.
W e’ve raised more than £110,000 to date and have been thrilled to send out grants to families who would otherwise have not been able to come to us. Minty is now walking independently and is very social. Her speech is fantastic. She’s a delight and very much a teenager. She still spends four afternoons a week on the spider. It might have been hard in the beginning but once she realised how much progress she was making her motivation and determination kept her going and she’s achieved so much.
l For more information call the Footsteps centre on 01865 858 382/065 or visit footsteps.ltd.uk
l For the Footsteps Foundation charity www.footstepsfoundation.com
Interview by PENNY STRETTONDR ALISON STEWART is an Edinburgh-based GP with an interest in cerebral palsy. She says: Cerebral palsy is the name given to a group of conditions that cause movement problems. The most common type leads to stiff or rigid muscles in the limbs and can range from mild to severe. It results from damage to the brain usually before birth or from an incorrectly developed brain.
It affects about one in 400 people. Physiotherapy is the prime technique for treating cerebral palsy. It prevents muscle weakness and enhances walking and standing. Anything that improves movement and motor skills and helps to enhance a person’s life is beneficial.
Tuesday August 25,2009
Minty Hoyer Millar, 17, who has cerebral palsy, has become mobile with the aid of a strange device called the spider. Her mother Pip, 49, tells her story
Minty was my fourth child so I was aware she was not progressing as she should. I saw she was struggling to achieve the usual baby and toddler milestones. At 12 months she was assessed and we were told she was physically and mentally handicapped and would never achieve beyond the capabilities of a four–year-old. I was devastated.
Doctors weren’t sure what was wrong. Cerebral palsy, a neurological disorder affecting balance and movement was confirmed when Minty was 22 months old. I learned it leaves sufferers with little or no mobility. We were told we’d have to wait more than a year to see an NHS physiotherapist. I researched the condition to see what other help was available but it became clear we would have to do all the work to make sure she had the best life possible.
‘It gives kids a confidence boost'
As Minty got older she was very floppy. By the time she was nine she could only crawl. She couldn’t stand, had no balance and very little speech.
I felt sad when I looked at her. I wanted her to be part of everything but she couldn’t. It was frustrating and upsetting because I knew from day one that she could achieve much more. With three other children, William now 22, Thomas, 20, and Henry, 19, we just had get on with it.
I spent my spare time finding out more about treatments around the world. I heard about a therapy called Footsteps in the city of Koszalin, north-west Poland. It uses exercises that focus on improving movements such as rolling over, supporting, reaching, grasping and holding.
It also teaches patients to shift their body weight and move from one place to another, enabling greater mobility and independence and encouraging increased self-confidence. All sorts of apparatus including balls, rolls, trampolines and ladders are used. We begain travelling to Poland every other month and after a year Minty was more mobile and happier.
There we discovered a device called the spider. It is a frame with bungee ropes attached which holds the child in place while physiotherapists work on improving their muscle strength and posture. It looks like a giant spider’s web.
By supporting Minty in an upright position it allowed her to move independently. Therapists could put her body through various exercises in different positions so it could be aligned properly. This helped develop her balance. It was great fun and she enjoyed it a lot.
With it she learned to stand independently and walk a little bit. Stimulating so many different muscle groups even helped her speech.
I couldn’t help thinking it was a huge shame that so many others in the UK were missing out on the opportunity Minty had. Then in 2004, when Minty was 12, my husband Christian suggested we set up our own Footsteps centre in an outbuilding at our home in South Warborough, Oxfordshire, so that others could use the spider. I was excited about the idea. Eventually we persuaded two amazing physiotherapists Filip and Gosia to come over from Poland to work with us.
When children use the spider it can be the first time they have stood upright. It gives them a huge confidence boost and the therapists can try lots of exercises with them.
They have a new sense of freedom. The spider helps with stability and balance and the children love playing games like catching balls while using it.
Last year we set up the Footsteps Foundation charity to help families who can’t afford the treatment, which costs about £1,800 for a three-week course.
W e’ve raised more than £110,000 to date and have been thrilled to send out grants to families who would otherwise have not been able to come to us. Minty is now walking independently and is very social. Her speech is fantastic. She’s a delight and very much a teenager. She still spends four afternoons a week on the spider. It might have been hard in the beginning but once she realised how much progress she was making her motivation and determination kept her going and she’s achieved so much.
l For more information call the Footsteps centre on 01865 858 382/065 or visit footsteps.ltd.uk
l For the Footsteps Foundation charity www.footstepsfoundation.com
Interview by PENNY STRETTONDR ALISON STEWART is an Edinburgh-based GP with an interest in cerebral palsy. She says: Cerebral palsy is the name given to a group of conditions that cause movement problems. The most common type leads to stiff or rigid muscles in the limbs and can range from mild to severe. It results from damage to the brain usually before birth or from an incorrectly developed brain.
It affects about one in 400 people. Physiotherapy is the prime technique for treating cerebral palsy. It prevents muscle weakness and enhances walking and standing. Anything that improves movement and motor skills and helps to enhance a person’s life is beneficial.
23 August 2009
Area child battling cerebral palsy
MARTINSBURG - Two years ago, the Kee family had never heard of a little town in Mexico called Nuevo Progresso, so obviously they didn't know what a great role it would play in their lives.
Brodie Kee, 20 months old, made his trip to Nuevo Progresso when he was only 14 months old. This wasn't a vacation to see the sights of Mexico, but a visit to a clinic called the International Stem Cell Institute.
"I had the perfect pregnancy. Nothing was wrong," said 20-year-old Kayla Kee, Brodie's mother. But two weeks before her due date, she became very ill and started having severe contractions. She noticed Brodie hadn't been moving as much as usual. The pain was so severe she decided to go to the emergency room, and after a through examination, her doctors at Ruby Memorial Hospital in Morgantown decided she needed an emergency Caesarean section because the baby's heart rate was extremely slow.
When he was born, Brodie wasn't breathing. Brodie's father, 22-year-old Adam Kee, said it took eight minutes to revive him. The doctor's recommended Brodie be immediately flown to Georgetown University Hospital in Washington, D.C., for a treatment called "total body cooling."
According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, body cooling is a procedure used to protect against brain injury in full-term infants born with birth asphyxia. The hope of body cooling is that it will increase the infant's chances for survival and possibly decrease the severity of neurological disability.
"The nurse at Georgetown told us Brodie had about a 10 percent chance of survival," said Rick Kee, Brodie's grandfather. They honestly didn't think he was going to make it.
For three days, Brodie was intubated and kept on a cooling blanket.
"He didn't move. He didn't cry. He didn't do anything," said Diane Kee, Brodie's grandmother.
After two weeks at Georgetown, Brodie was flown back to Ruby Memorial Hospital so he could be closer to home, where his parents are students at West Virginia University.
When Brodie returned to Ruby Memorial Hospital, Adam Kee said the medical staff painted a very grim picture for them.
"They gave him a 40 percent chance of living," he said. They were told that even if Brodie did survive, he may be blind and/or deaf, or never walk, talk or eat on his own."
To this day the Kees have no idea what happened to their baby - what made him so sick. They do know that whatever caused his asphyxia at birth now has caused him to have cerebral palsy.
The National Institute of Neurological Disorders and Stroke defines cerebral palsy as being "any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. ... It is caused by abnormalities in parts of the brain that control muscle movements. The most common (signs) are a lack of muscle coordination when performing voluntary movements; ... stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a 'scissored' gait and muscle tone that is either too stiff or too floppy."
Brodie has the spasticity form of cerebral palsy, and before his trip to Mexico, he was very stiff and rigid.
What happened in Mexico? A miracle some might say.
Diane and Rick Kee are both nurses in the Martinsburg area, and during a seminar they attended in Morgantown for continuing education, they were introduced to stem cell research and what is being done to help diabetic patients.
Wondering what stem cell treatment might do for Brodie, the Kees started researching stem cell therapy and cerebral palsy.
"When we got home, we started searching on the Internet," Diane Kee said. "We saw they were doing stem cell treatment at Duke University and in Georgia, but you had to have the baby's cord blood and we didn't."
Kayla and Adam Kee said they had heard about saving their baby's cord blood after birth, but like most young parents, they didn't have the $2,000 needed to pay for it and actually never thought they would need it.
One day, feeling like they had exhausted all of their options, Diane Kee said she came across the Web site for the International Stem Cell Institute located in Nuevo Progresso, Mexico.
"A whole new world opened up to us," she said.
She read what the Web site had to say, then after speaking with the parent of a child in Florida who had the procedure, the Kees felt it was worth a try for Brodie.
"I was very skeptical," said Kayla Kee. "I thought, 'Oh my gosh - am I really about to do this?'"
Being very apprehensive, the Kees took a leap of faith and left for Nuevo Progresso with $10,000 to pay for Brodie's placental stem cell therapy treatment.
Nuevo Progress is located just across the southern tip of Texas in Mexico. The Kees actually stayed at a hotel in McAllen, Texas.
The Kees admit it was a little scary. There they were, going into a foreign country that has a violent reputation, while carrying a cashier's check.
They found that the International Stem Cell Institute is a very small operation made up of one doctor, a nurse and an office manager. Again, not very reassuring.
But once they met Rita Alexander, the office manager, and Dr. Gonzalez, they knew Brodie was in good hands.
"He was very sweet. Before the procedure, he made sure we didn't have any other questions," said Kayla. "You could see in his eyes that he really cared."
Although some of the equipment looked a little dated, the Kees said the office was very clean and the staff was very friendly.
Adam said Alexander told them that the worst that could happen was that nothing would happen, but the best that could happen was that they would see some sort of improvement in Brodie - and they have.
The entire procedure took only about a half-hour to complete. Brodie had four 1/4-inch incisions made - one in each arm and leg and one in his stomach. In the incision, Gonzalez placed placental and umbilical cord tissue containing stem cells. He then closed the incisions and the procedure was over. He used a local anesthetic for each incision and Brodie was awake the entire time, smiling and happy, his parents said.
Before the treatment, Brodie was not able to lie on his stomach. Adam Kee said his muscles would become very tense and he would arch his back, bowed up like a banana.
"I could tell he was in pain," said Kayla Kee. But ever since the treatment, Brodie has not had one episode of back arching and can even lie on his stomach now.
The Kees said they started noticing improvements in about two weeks.
"It was almost overnight," Adam Kee said.
Brodie had the procedure done last St. Patrick's Day, and his parents said he is a completely different child now.
Before Brodie had the stem cells placed into his stomach, he used to projectile vomit and couldn't keep any food down.
But now, his mother said he's eating well and has put on weight.
The Kees said they want to emphasize that the stem cells used for Brodie's treatment came from placental and umbilical cord tissue, not embryonic stem cells.
Diane Kee said the tissue used in the procedure goes through extensive testing, and because it does not have a blood type, stem cell treatment is not like an organ transplant - it is universal.
The Kees said that stem cell treatment is something that can be multiple times, depending on the illness being treated. For example, if someone has a degenerative disease, like rheumatoid arthritis, the patient must go back for follow-up treatments in order to maintain a certain level of health. If the disease is non-degenerative, like cerebral palsy, the patient can keep going back for treatment and hopefully continue getting positive results until the patient has reached full potential.
The Kees plan on returning to either Mexico or possibly Germany to continue Brodie's treatment.
Unfortunately the stem cell treatment and the trips involved are very expensive, and for two college students, it's more than just a financial stretch. That is why the Kees are planning several fundraising events in the future.
On Oct. 23, the Civitan Club is hosting a basket bingo at the Moose Lodge in Martinsburg. Diane Kee said she has a lot of Longaberger baskets she is donating to the cause.
Adam Kee said he went to high school with Nate Sowers, quarterback for the West Virginia Mountaineers, and he has given him three footballs to be signed by Noel Devine and other players on the team, that he will then raffle off.
The Kees hope the community fundraising efforts will help them pay for Brodie's treatment and travel costs.
When it comes to stem cell research, "new things are happening every day," said Diane Kee.
Even though patients might have to go out of the country at this point to seek treatment, the Kees want the community to know there are options out there for people struggling with a variety of diseases.
"I don't want people to hesitate because they're scared," said Kayla Kee.
As Diane Kee said, "We took a leap of faith," and it has certainly paid off.
Brodie Kee, 20 months old, made his trip to Nuevo Progresso when he was only 14 months old. This wasn't a vacation to see the sights of Mexico, but a visit to a clinic called the International Stem Cell Institute.
"I had the perfect pregnancy. Nothing was wrong," said 20-year-old Kayla Kee, Brodie's mother. But two weeks before her due date, she became very ill and started having severe contractions. She noticed Brodie hadn't been moving as much as usual. The pain was so severe she decided to go to the emergency room, and after a through examination, her doctors at Ruby Memorial Hospital in Morgantown decided she needed an emergency Caesarean section because the baby's heart rate was extremely slow.
When he was born, Brodie wasn't breathing. Brodie's father, 22-year-old Adam Kee, said it took eight minutes to revive him. The doctor's recommended Brodie be immediately flown to Georgetown University Hospital in Washington, D.C., for a treatment called "total body cooling."
According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, body cooling is a procedure used to protect against brain injury in full-term infants born with birth asphyxia. The hope of body cooling is that it will increase the infant's chances for survival and possibly decrease the severity of neurological disability.
"The nurse at Georgetown told us Brodie had about a 10 percent chance of survival," said Rick Kee, Brodie's grandfather. They honestly didn't think he was going to make it.
For three days, Brodie was intubated and kept on a cooling blanket.
"He didn't move. He didn't cry. He didn't do anything," said Diane Kee, Brodie's grandmother.
After two weeks at Georgetown, Brodie was flown back to Ruby Memorial Hospital so he could be closer to home, where his parents are students at West Virginia University.
When Brodie returned to Ruby Memorial Hospital, Adam Kee said the medical staff painted a very grim picture for them.
"They gave him a 40 percent chance of living," he said. They were told that even if Brodie did survive, he may be blind and/or deaf, or never walk, talk or eat on his own."
To this day the Kees have no idea what happened to their baby - what made him so sick. They do know that whatever caused his asphyxia at birth now has caused him to have cerebral palsy.
The National Institute of Neurological Disorders and Stroke defines cerebral palsy as being "any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. ... It is caused by abnormalities in parts of the brain that control muscle movements. The most common (signs) are a lack of muscle coordination when performing voluntary movements; ... stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a 'scissored' gait and muscle tone that is either too stiff or too floppy."
Brodie has the spasticity form of cerebral palsy, and before his trip to Mexico, he was very stiff and rigid.
What happened in Mexico? A miracle some might say.
Diane and Rick Kee are both nurses in the Martinsburg area, and during a seminar they attended in Morgantown for continuing education, they were introduced to stem cell research and what is being done to help diabetic patients.
Wondering what stem cell treatment might do for Brodie, the Kees started researching stem cell therapy and cerebral palsy.
"When we got home, we started searching on the Internet," Diane Kee said. "We saw they were doing stem cell treatment at Duke University and in Georgia, but you had to have the baby's cord blood and we didn't."
Kayla and Adam Kee said they had heard about saving their baby's cord blood after birth, but like most young parents, they didn't have the $2,000 needed to pay for it and actually never thought they would need it.
One day, feeling like they had exhausted all of their options, Diane Kee said she came across the Web site for the International Stem Cell Institute located in Nuevo Progresso, Mexico.
"A whole new world opened up to us," she said.
She read what the Web site had to say, then after speaking with the parent of a child in Florida who had the procedure, the Kees felt it was worth a try for Brodie.
"I was very skeptical," said Kayla Kee. "I thought, 'Oh my gosh - am I really about to do this?'"
Being very apprehensive, the Kees took a leap of faith and left for Nuevo Progresso with $10,000 to pay for Brodie's placental stem cell therapy treatment.
Nuevo Progress is located just across the southern tip of Texas in Mexico. The Kees actually stayed at a hotel in McAllen, Texas.
The Kees admit it was a little scary. There they were, going into a foreign country that has a violent reputation, while carrying a cashier's check.
They found that the International Stem Cell Institute is a very small operation made up of one doctor, a nurse and an office manager. Again, not very reassuring.
But once they met Rita Alexander, the office manager, and Dr. Gonzalez, they knew Brodie was in good hands.
"He was very sweet. Before the procedure, he made sure we didn't have any other questions," said Kayla. "You could see in his eyes that he really cared."
Although some of the equipment looked a little dated, the Kees said the office was very clean and the staff was very friendly.
Adam said Alexander told them that the worst that could happen was that nothing would happen, but the best that could happen was that they would see some sort of improvement in Brodie - and they have.
The entire procedure took only about a half-hour to complete. Brodie had four 1/4-inch incisions made - one in each arm and leg and one in his stomach. In the incision, Gonzalez placed placental and umbilical cord tissue containing stem cells. He then closed the incisions and the procedure was over. He used a local anesthetic for each incision and Brodie was awake the entire time, smiling and happy, his parents said.
Before the treatment, Brodie was not able to lie on his stomach. Adam Kee said his muscles would become very tense and he would arch his back, bowed up like a banana.
"I could tell he was in pain," said Kayla Kee. But ever since the treatment, Brodie has not had one episode of back arching and can even lie on his stomach now.
The Kees said they started noticing improvements in about two weeks.
"It was almost overnight," Adam Kee said.
Brodie had the procedure done last St. Patrick's Day, and his parents said he is a completely different child now.
Before Brodie had the stem cells placed into his stomach, he used to projectile vomit and couldn't keep any food down.
But now, his mother said he's eating well and has put on weight.
The Kees said they want to emphasize that the stem cells used for Brodie's treatment came from placental and umbilical cord tissue, not embryonic stem cells.
Diane Kee said the tissue used in the procedure goes through extensive testing, and because it does not have a blood type, stem cell treatment is not like an organ transplant - it is universal.
The Kees said that stem cell treatment is something that can be multiple times, depending on the illness being treated. For example, if someone has a degenerative disease, like rheumatoid arthritis, the patient must go back for follow-up treatments in order to maintain a certain level of health. If the disease is non-degenerative, like cerebral palsy, the patient can keep going back for treatment and hopefully continue getting positive results until the patient has reached full potential.
The Kees plan on returning to either Mexico or possibly Germany to continue Brodie's treatment.
Unfortunately the stem cell treatment and the trips involved are very expensive, and for two college students, it's more than just a financial stretch. That is why the Kees are planning several fundraising events in the future.
On Oct. 23, the Civitan Club is hosting a basket bingo at the Moose Lodge in Martinsburg. Diane Kee said she has a lot of Longaberger baskets she is donating to the cause.
Adam Kee said he went to high school with Nate Sowers, quarterback for the West Virginia Mountaineers, and he has given him three footballs to be signed by Noel Devine and other players on the team, that he will then raffle off.
The Kees hope the community fundraising efforts will help them pay for Brodie's treatment and travel costs.
When it comes to stem cell research, "new things are happening every day," said Diane Kee.
Even though patients might have to go out of the country at this point to seek treatment, the Kees want the community to know there are options out there for people struggling with a variety of diseases.
"I don't want people to hesitate because they're scared," said Kayla Kee.
As Diane Kee said, "We took a leap of faith," and it has certainly paid off.
02 July 2009
The Blues: is it in the Disability Community, Too?
Often, the reality of our disabilities can lead to an increased instance of depression. Our physical scars may have heeled, but the physiological and sociological have not. Ninety-nine people out of one hundred and forty-four; according to a recent study linked their learning disabilities with depression and other depressive disorders. This is the result of a lack of flexibility in the education process. Students are often placed with those with emotional and behavior problems. Teachers are therefore, unable to give the time needed to each individual student because they must serve as baby-sitters to those who do not wish to participate in the learning process.
Yet, within each of us their remains a strong desire to discover “the secret.” This means, that, most people given patience, tolerance, and a relaxed environment can learn and succeed. This success will reinforce the positive aspects of each person’s life. Every achievement from traveling the world wide, to putting on a dinner is note worthy and valuable. The memory of past achievements can sometimes serve as a reminder in the depth of suffering that this current sadness will not last.
Many students can look back and remember that one parent, teacher, or friend who took the time to find it within themselves, to figure out just what that person needed to thrive, survive, and to see the light at the end of the tunnel. Often, just as much as the chemical imbalance, feelings of depression, and low self-esteem, come from a sense that a person is entirely alone. The awareness, that in fact, everyone wants an individual to in fact, succeed, can be very liberating. There is an old saying which demonstrates this idea. “Only if you have been in the deepest pit of sorrow, loss, and despair, can you ever know how magnificent it is to climb to the to of the highest mountain.”
Yet, within each of us their remains a strong desire to discover “the secret.” This means, that, most people given patience, tolerance, and a relaxed environment can learn and succeed. This success will reinforce the positive aspects of each person’s life. Every achievement from traveling the world wide, to putting on a dinner is note worthy and valuable. The memory of past achievements can sometimes serve as a reminder in the depth of suffering that this current sadness will not last.
Many students can look back and remember that one parent, teacher, or friend who took the time to find it within themselves, to figure out just what that person needed to thrive, survive, and to see the light at the end of the tunnel. Often, just as much as the chemical imbalance, feelings of depression, and low self-esteem, come from a sense that a person is entirely alone. The awareness, that in fact, everyone wants an individual to in fact, succeed, can be very liberating. There is an old saying which demonstrates this idea. “Only if you have been in the deepest pit of sorrow, loss, and despair, can you ever know how magnificent it is to climb to the to of the highest mountain.”
23 May 2009
New treatments used for kids with old medical problems
WICHITA, Kansas – Yoga is often used for exercise and relaxation, but now doctors are recommending it for children with special needs. It’s just one example of new approaches to old medical problems. What’s meant to be a workout is just fun for six-year-old Jami. She has cerebral palsy, which caused her muscles to constrict and tighten. So, her doctor recommended yoga. "I was surprised-- I guess more hopeful that it would work,” said Jami’s mother Patty Moulds. “It kind of makes sense when you think about yoga is stretching."
Instructor Sheryl Haynes uses several yoga poses to strengthen Jami’s lower back and leg muscles. "Since she's a tippy-toe walker, getting stretched out back here, the calves and tendons back through here -- we're working on things that do that,” Haynes said. She also works with kids who have Down’s syndrome and other developmental delays. She uses nursery rhymes practice their language skills at the same time.
It’s modern therapy based on an ancient exercise. Another unusual treatment that more parents are turning to for help is at a chiropractic clinic, where the doctor claims he can cure colic. What's more, he says it only takes a few weeks. Colic affects one in five babies, causing uncontrollable crying. "Constantly from morning until night, into the wee hours of the morning,” said Rachel Murphy of her baby’s crying. “It was 24 hours she cried." But Ella was treated by Dr. Dennis Scharenberg, who believes he knows what causes colic. He says a weak valve between the babies’s small and large intestines leads to painful indigestion. "And when I strengthen that muscle, it stops leaking, and when it stops leaking, the colic is gone,” Dr. Scharenberg said. “It's gone and it doesn't come back." He simply messages the muscle for about 20 minutes several times a week. "After about three treatments, we noticed a significant improvement -- a lot less crying, more sleep at night,” said mother Crystal Jones. All of the moms say they were skeptical at first, but desperate enough to give it a try. "It's like it's too good to be true, but it is, and it works,” said mother Jennifer George. So, why don’t other doctors do it? Dr. Sharenberg says it’s a technique he developed himself and actually volunteers his services to get the word out, hoping it will bring help for the helpless and peace of mind for parents.
Instructor Sheryl Haynes uses several yoga poses to strengthen Jami’s lower back and leg muscles. "Since she's a tippy-toe walker, getting stretched out back here, the calves and tendons back through here -- we're working on things that do that,” Haynes said. She also works with kids who have Down’s syndrome and other developmental delays. She uses nursery rhymes practice their language skills at the same time.
It’s modern therapy based on an ancient exercise. Another unusual treatment that more parents are turning to for help is at a chiropractic clinic, where the doctor claims he can cure colic. What's more, he says it only takes a few weeks. Colic affects one in five babies, causing uncontrollable crying. "Constantly from morning until night, into the wee hours of the morning,” said Rachel Murphy of her baby’s crying. “It was 24 hours she cried." But Ella was treated by Dr. Dennis Scharenberg, who believes he knows what causes colic. He says a weak valve between the babies’s small and large intestines leads to painful indigestion. "And when I strengthen that muscle, it stops leaking, and when it stops leaking, the colic is gone,” Dr. Scharenberg said. “It's gone and it doesn't come back." He simply messages the muscle for about 20 minutes several times a week. "After about three treatments, we noticed a significant improvement -- a lot less crying, more sleep at night,” said mother Crystal Jones. All of the moms say they were skeptical at first, but desperate enough to give it a try. "It's like it's too good to be true, but it is, and it works,” said mother Jennifer George. So, why don’t other doctors do it? Dr. Sharenberg says it’s a technique he developed himself and actually volunteers his services to get the word out, hoping it will bring help for the helpless and peace of mind for parents.
10 May 2009
Against all odds - Weymouth boy Alex's brave battle
A BOY who doctors said would not live beyond his first birthday has defied the odds to become his family’s pride and joy.
Little Alex Lever is now looking forward to celebrating his fourth birthday and friends and family says he lights up all their lives.
Trapped in a body that won’t respond to his brain, the three-year-old has been described by doctors as having the mental age of a 10-month-old baby.
But Alex’s loving family believes there is ‘much more going on’ than people realise and say he has made remarkable progress in the past year and a half.
They are trying to raise £2,000, with the support of Weymouth’s community, for specialist sensory equipment and a standing frame to improve the quality of his life.
Dad Joe Lever, 28, of Wyke Regis said: “The equipment would make a huge difference to Alex.
“The most important thing is a vibrating mattress, which connects to a stereo and moves in time to the music, and a standing frame that would allow Alex to use his legs.
“He’s incredibly active but he can’t support himself and he’s getting too big for us to hold him all the time.
“The standing frame would be a precursor to a walking frame. I’m confident he’s going to walk some day.”
He added: “All the equipment and disability aids are very expensive so we’re grateful to Ian Young and the other fundraisers like Portland firefighters who are making this possible.”
Alex, who lives with mum Danielle Williams and her family in Weymouth’s Park District, has spastic quadriplegic cerebral palsy and myoclonic epilepsy with seizure.
When he was born he registered ‘only slightly above stillborn’ and Joe said: “We’re very lucky to have him, he very nearly died.”
Alex currently takes four different medications a day and cannot walk or crawl but he never stops moving and needs to consume 2,000 calories a day.
He does not like anything put in his mouth so has to be fed a special high-calorie diet through a nose tube.
Alex can only make a few basic sounds and requires 24-hour care.
For the past two years, two care workers from Julia’s House children’s hospice have visited weekly to provide four hours of respite care.
Since September Alex has attended Wyvern School for disabled children two mornings a week, where he loves the soft room, sensory room and will soon start sessions in the hydro therapy pool.
Grandma Sylvia Williams, 54, said: “He loves his baths so we think he’ll really enjoy it.
“One hip hasn’t formed properly and is non-weight bearing, so it’s safe to say Alex will never walk unaided.
“The doctors said Alex wasn’t going to last a year and said he was a vegetable - but he’s certainly no vegetable, he’s quite happy.
“All the staff at Wyvern say Alex knows he’s loved.”
Joe works split shifts as assistant steward at the Wyke Regis Working Men's Club and spends five afternoons a week with Alex.
Alex is also visited regularly by his other grandparents, who live in Preston, Weymouth.
Grandma Jan Lever, 62, said: “He’s got a terrific sense of humour – he hits you and laughs.
“He’s definitely making progress.”
On May Bank Holiday Monday a charity football match, disco and raffle were held to raise money for Alex’s specialist equipment.
Organised by Ian Young and sponsored by local businessman Stuart Barnes, the event at Williams Avenue pitch, Weymouth included a barbecue, and bouncy castle.
A disco was then held at the Wyke Regis Working Mens Club on Portland Road, Weymouth. More than £1,000 was raised on the day.
Anybody with donations or fundraising ideas for Alex’s cause is asked to contact the club on 01305 786867
13 April 2009
A baby's hand.
Please read before viewing picture - it's worth it!
A picture began circulating in November. It should be 'The Picture of the Year,' or perhaps, 'Picture of the Decade.' It won't be. In fact,unless you obtained a copy of the US paper which published it, you probably
Would never have seen it.
The picture is that of a 21-week-old unborn baby named Samuel Alexander Armas, who is being operated on by surgeon named Joseph Bruner.
The baby was diagnosed with spina bifida and would not survive if removed from his mother's womb. Little Samuel's mother, Julie Armas, is an obstetrics nurse in Atlanta . She knew of Dr. Bruner's remarkable
Surgical procedure. Practicing at Vanderbilt University Medical Center in Nashville, he performs these special operations while the baby is still in the womb.
During the procedure, the doctor removes the uterus via C-section and makes a small incision to operate on the baby. As Dr.Bruner completed the surgery on Samuel, the little guy reached his tiny, but fully developed hand through the incision and firmly grasped the surgeon's finger.
Dr.Bruner was reported as saying that when his finger was grasped, it was the most emotional moment of his life, and that for an instant during the procedure he was just frozen, totally immobile.
The photograph captures this amazing event with perfect clarity. The editors titled the picture, 'Hand of Hope.' The text explaining the picture begins, 'The tiny hand of 21-week- old fetus Samuel Alexander Armas emerges from the mother's uterus to grasp the finger of Dr. Joseph Bruner as if thanking the doctor for the gift of life.'
Little Samuel's mother said they 'wept for days' when they saw the picture. She said, 'The photo reminds us pregnancy isn't about disability or an illness, it's about a little person.' Samuel was born in perfect health, the operation 100 percent successful.
Now see the actual picture, and it is awesome...incredible....
Don't tell me our God isn't an awesome God!!!!!
A picture began circulating in November. It should be 'The Picture of the Year,' or perhaps, 'Picture of the Decade.' It won't be. In fact,unless you obtained a copy of the US paper which published it, you probably
Would never have seen it.
The picture is that of a 21-week-old unborn baby named Samuel Alexander Armas, who is being operated on by surgeon named Joseph Bruner.
The baby was diagnosed with spina bifida and would not survive if removed from his mother's womb. Little Samuel's mother, Julie Armas, is an obstetrics nurse in Atlanta . She knew of Dr. Bruner's remarkable
Surgical procedure. Practicing at Vanderbilt University Medical Center in Nashville, he performs these special operations while the baby is still in the womb.
During the procedure, the doctor removes the uterus via C-section and makes a small incision to operate on the baby. As Dr.Bruner completed the surgery on Samuel, the little guy reached his tiny, but fully developed hand through the incision and firmly grasped the surgeon's finger.
Dr.Bruner was reported as saying that when his finger was grasped, it was the most emotional moment of his life, and that for an instant during the procedure he was just frozen, totally immobile.
The photograph captures this amazing event with perfect clarity. The editors titled the picture, 'Hand of Hope.' The text explaining the picture begins, 'The tiny hand of 21-week- old fetus Samuel Alexander Armas emerges from the mother's uterus to grasp the finger of Dr. Joseph Bruner as if thanking the doctor for the gift of life.'
Little Samuel's mother said they 'wept for days' when they saw the picture. She said, 'The photo reminds us pregnancy isn't about disability or an illness, it's about a little person.' Samuel was born in perfect health, the operation 100 percent successful.
Now see the actual picture, and it is awesome...incredible....
Don't tell me our God isn't an awesome God!!!!!
28 March 2009
Breakthrough Parenting for Children With Special Needs
By Judy Winter; 258 pages. Subtitle: Raising the Bar of Expectations
Winter combines her talents for journalism and parenting in a book that is part inspiration, part how-to, and wholly optimistic about your family's survival as you take on the challenge of raising a child with special needs. It's a particularly useful guide to those just starting out on the journey of dealing with special needs, and hearing from everybody that it's too hard and their life is over and their situation is tragic. Breakthrough Parenting offers a much-needed antidote to all that gloom and doom.
Pros
Takes an upbeat approach to the challenging task of special-needs parenting. Gives parents of children newly diagnosed a voice of experience to guide them, Full of specific tips for a variety of situations and relationships. Includes inspirational stories of individuals with disabilities succeeding. Offers listings of resources with every chapter
Cons
More useful to those just starting out than those who've been at it a while. May seem too upbeat if you're really struggling. Book was published in 2006, so some resources may not be up to date
Description
Part One: Welcome to Breakthrough Parenting for Children With Special Needs
Chapter 1: The Perfect-Baby Dream
Chapter 2: First You Cry
Chapter 3: No Labels, Yes Hope
Part Two: Guidelines for the Preschool Through College Years
Chapter 4: The Pre-K and Elementary Years
Chapter 5: Middle School, Junior High, and High School
Chapter 6: Advocating for Techniques and Programs That Work
Part Three: Focusing on the Family
Chapter 7: Embracing a New Definition of Family and Planning for the Future
Chapter 8: Preserving Your Marriage, Caring for Yourself, and Surviving the Death of a Child
Chapter 9: Meeting the Needs of Siblings
Part Four: Honoring Special Needs Excellence
Chapter 10: Honoring Special Needs Excellence
A Conversation With Timothy P. Shriver, Ph.D.
A Conversation With Dana Reeve
Guide Review - Book Review: Breakthrough Parenting for Children With Special Needs
Learning that a child has special needs can be traumatic for parents -- in no small part, because professionals tend to present it as the End of the World. They'd do a much better service by passing on this book, which acknowledges the grief that must be processed but also provides an action plan for getting on with your life and your child's.
Each section of the book starts off with a "Bill of Rights," including one for children and young adults; parents; siblings; and professionals. Among the rights Winter bestows on parents are the right to "Grieve the loss of a child with special needs" and "Ask tough questions, including Why? -- but also to "Celebrate your child's birth," "Move about freely in society with your child," and "Be proud of your child's accomplishments." Since our children are so often looked upon as nothing but tragic, I appreciated the balance.
Illustrating the points on hoping for the best for your child are stories of individuals with special needs and their families breaking expectations and living their lives. Also helpful are lists of resources at the end of each chapter that can send you off in pursuit of information for your particular situation.
If you've been a special-needs parent for a while and found your way to advocacy and empowerment and favorite resources of your own, the tips and pep talks here may be less useful than if you'd found them in the early days. Still, as your child grows and changes and moves on through school, there are always new suggestions that can help. And it may inspire you to think about how you can pass on your experience to parents starting out with trepidation, in a support group, a blog, or even a book of your own.
Winter combines her talents for journalism and parenting in a book that is part inspiration, part how-to, and wholly optimistic about your family's survival as you take on the challenge of raising a child with special needs. It's a particularly useful guide to those just starting out on the journey of dealing with special needs, and hearing from everybody that it's too hard and their life is over and their situation is tragic. Breakthrough Parenting offers a much-needed antidote to all that gloom and doom.
Pros
Takes an upbeat approach to the challenging task of special-needs parenting. Gives parents of children newly diagnosed a voice of experience to guide them, Full of specific tips for a variety of situations and relationships. Includes inspirational stories of individuals with disabilities succeeding. Offers listings of resources with every chapter
Cons
More useful to those just starting out than those who've been at it a while. May seem too upbeat if you're really struggling. Book was published in 2006, so some resources may not be up to date
Description
Part One: Welcome to Breakthrough Parenting for Children With Special Needs
Chapter 1: The Perfect-Baby Dream
Chapter 2: First You Cry
Chapter 3: No Labels, Yes Hope
Part Two: Guidelines for the Preschool Through College Years
Chapter 4: The Pre-K and Elementary Years
Chapter 5: Middle School, Junior High, and High School
Chapter 6: Advocating for Techniques and Programs That Work
Part Three: Focusing on the Family
Chapter 7: Embracing a New Definition of Family and Planning for the Future
Chapter 8: Preserving Your Marriage, Caring for Yourself, and Surviving the Death of a Child
Chapter 9: Meeting the Needs of Siblings
Part Four: Honoring Special Needs Excellence
Chapter 10: Honoring Special Needs Excellence
A Conversation With Timothy P. Shriver, Ph.D.
A Conversation With Dana Reeve
Guide Review - Book Review: Breakthrough Parenting for Children With Special Needs
Learning that a child has special needs can be traumatic for parents -- in no small part, because professionals tend to present it as the End of the World. They'd do a much better service by passing on this book, which acknowledges the grief that must be processed but also provides an action plan for getting on with your life and your child's.
Each section of the book starts off with a "Bill of Rights," including one for children and young adults; parents; siblings; and professionals. Among the rights Winter bestows on parents are the right to "Grieve the loss of a child with special needs" and "Ask tough questions, including Why? -- but also to "Celebrate your child's birth," "Move about freely in society with your child," and "Be proud of your child's accomplishments." Since our children are so often looked upon as nothing but tragic, I appreciated the balance.
Illustrating the points on hoping for the best for your child are stories of individuals with special needs and their families breaking expectations and living their lives. Also helpful are lists of resources at the end of each chapter that can send you off in pursuit of information for your particular situation.
If you've been a special-needs parent for a while and found your way to advocacy and empowerment and favorite resources of your own, the tips and pep talks here may be less useful than if you'd found them in the early days. Still, as your child grows and changes and moves on through school, there are always new suggestions that can help. And it may inspire you to think about how you can pass on your experience to parents starting out with trepidation, in a support group, a blog, or even a book of your own.
27 March 2009
Seizing the day
Young man undaunted by developmental disabilities
By Pam Mellskog
2009 Longmont Times-Call
LONGMONT — Though blue jean-clad and just 20 years old, Kyle Sanchez talks and acts like a gentleman.
He criticizes rap music for lyrics that “disrespect women” and holds his mother’s hand in public if she — a 42-year-old widow disabled by multiple sclerosis — becomes unsteady on her feet.
Sanchez — who lives with her and his younger brother, Andrew — got a job last year to help pay the family’s bills. But his helpful attitude earned him more than a paycheck.
Sanchez received the Governor’s Summer Job Hunt Award from 400 nominees statewide in August. In March, he became the 2009 Direct Support Professional of the Year in Colorado — recognition bestowed by the Virginia-based American Network of Community Options and Resources, a nonprofit, national trade association.
The kudos means more given his once-desperate survivor status as a baby born 16 weeks early on May 18, 1988.
His family waited two months to touch him. Eventually, they dressed him in Cabbage Patch Doll clothing and made tiny diapers with gauze.
Dolores Sanchez, Kyle Sanchez’s maternal grandmother, put down her knitting and held up her hand to describe the situation.
“He fit in the palm of my hand. ... And there wasn’t a part of his body that wasn’t attached to something,” she said, referring to the ventilator, monitor wires, intravenous lines and feeding tube. “I didn’t know how God was going to work this miracle, because I didn’t see it happening.”
The Children’s Hospital in Denver, where Kyle Sanchez lived until age 7 months, gave him a 20 percent chance of survival and a 10 percent chance of survival without serious disability.
No one except his mother, Maria Sanchez-Trujillo, expected him to live, much less to walk or talk.
Kyle Sanchez survived and then got help from age 3 on at the Lafayette-based Imagine! center for people with developmental disabilities. In 2007, he graduated from Skyline High School in Longmont.
“But he said it had always been his dream to work,” said Heather Hine, his supervisor in Imagine!’s Out and About program.
She hired him last May to work full time last summer as an assistant in this recreation therapy program for Imagine! clients. Participants include people ages 7 to 21 living with developmental disabilities such as autism, cerebral palsy and Down syndrome.
Kyle Sanchez now works part time in Out and About’s after-school program.
Hine remembers him arriving for the interview wearing pressed slacks, a dress shirt and a tie. After he interviewed well, she offered him the job.
“You should have seen his face. It was one of shock and just sheer joy,” she said. “He kept saying ‘Thank you,’ and ‘I’m going to work so hard.’”
Kristen Erby, a career counselor with Workforce Boulder County in Longmont, applauded him for landing a competitive job.
“Nobody with disabilities wants to be put (to work) in the back of a warehouse,” she said. “He’s compassionate and a great role model to the camp participants because he’s overcome his own barriers to employment.”
For instance, Kyle Sanchez struggles to understand time. To get to work or to his desk at Life Strategies University — the St. Vrain Valley School District’s two-year life skills program in Longmont — he stands by the family’s mailbox and waits until his cell phone’s digital clock reads 7:59 a.m.
Then, he knows to head for the bus — a service with time-sensitive schedules he worked for years to understand.
His prematurity also affected his fine motor skills. Tying shoes and opening potato chip bags remain a challenge.
But Kyle Sanchez can do nothing more than take medication for the worst consequence of his early birth — a weak heart. His ticker may fail to give him the years he wants to work, start a family and enjoy his surprising life.
“The attitude for me would be, ‘Keep on goin’ ’til you can’t no more,’” he said.
Pam Mellskog can be reached at 303-684-5224 or pmellskog@times-call.com.
By Pam Mellskog
2009 Longmont Times-Call
LONGMONT — Though blue jean-clad and just 20 years old, Kyle Sanchez talks and acts like a gentleman.
He criticizes rap music for lyrics that “disrespect women” and holds his mother’s hand in public if she — a 42-year-old widow disabled by multiple sclerosis — becomes unsteady on her feet.
Sanchez — who lives with her and his younger brother, Andrew — got a job last year to help pay the family’s bills. But his helpful attitude earned him more than a paycheck.
Sanchez received the Governor’s Summer Job Hunt Award from 400 nominees statewide in August. In March, he became the 2009 Direct Support Professional of the Year in Colorado — recognition bestowed by the Virginia-based American Network of Community Options and Resources, a nonprofit, national trade association.
The kudos means more given his once-desperate survivor status as a baby born 16 weeks early on May 18, 1988.
His family waited two months to touch him. Eventually, they dressed him in Cabbage Patch Doll clothing and made tiny diapers with gauze.
Dolores Sanchez, Kyle Sanchez’s maternal grandmother, put down her knitting and held up her hand to describe the situation.
“He fit in the palm of my hand. ... And there wasn’t a part of his body that wasn’t attached to something,” she said, referring to the ventilator, monitor wires, intravenous lines and feeding tube. “I didn’t know how God was going to work this miracle, because I didn’t see it happening.”
The Children’s Hospital in Denver, where Kyle Sanchez lived until age 7 months, gave him a 20 percent chance of survival and a 10 percent chance of survival without serious disability.
No one except his mother, Maria Sanchez-Trujillo, expected him to live, much less to walk or talk.
Kyle Sanchez survived and then got help from age 3 on at the Lafayette-based Imagine! center for people with developmental disabilities. In 2007, he graduated from Skyline High School in Longmont.
“But he said it had always been his dream to work,” said Heather Hine, his supervisor in Imagine!’s Out and About program.
She hired him last May to work full time last summer as an assistant in this recreation therapy program for Imagine! clients. Participants include people ages 7 to 21 living with developmental disabilities such as autism, cerebral palsy and Down syndrome.
Kyle Sanchez now works part time in Out and About’s after-school program.
Hine remembers him arriving for the interview wearing pressed slacks, a dress shirt and a tie. After he interviewed well, she offered him the job.
“You should have seen his face. It was one of shock and just sheer joy,” she said. “He kept saying ‘Thank you,’ and ‘I’m going to work so hard.’”
Kristen Erby, a career counselor with Workforce Boulder County in Longmont, applauded him for landing a competitive job.
“Nobody with disabilities wants to be put (to work) in the back of a warehouse,” she said. “He’s compassionate and a great role model to the camp participants because he’s overcome his own barriers to employment.”
For instance, Kyle Sanchez struggles to understand time. To get to work or to his desk at Life Strategies University — the St. Vrain Valley School District’s two-year life skills program in Longmont — he stands by the family’s mailbox and waits until his cell phone’s digital clock reads 7:59 a.m.
Then, he knows to head for the bus — a service with time-sensitive schedules he worked for years to understand.
His prematurity also affected his fine motor skills. Tying shoes and opening potato chip bags remain a challenge.
But Kyle Sanchez can do nothing more than take medication for the worst consequence of his early birth — a weak heart. His ticker may fail to give him the years he wants to work, start a family and enjoy his surprising life.
“The attitude for me would be, ‘Keep on goin’ ’til you can’t no more,’” he said.
Pam Mellskog can be reached at 303-684-5224 or pmellskog@times-call.com.
Visitors Guide 'Let’s Go with the Children’
Take a break from the usual overseas holiday this summer and inspire your family with all that England has to offer!
Planning the family holidays this year could present us all with some exciting challenges. The economic downturn not only makes the working week a little more worrisome but when you do have the chance to take a break, you feel like you still need to save money.
A recent survey suggested that more than half of us will stay in the UK this year and whilst this may not initially seem like the most appealing prospect, for families with children there is a world of adventure and hidden gems to be found on English soil – and a great deal of them are free of charge!
You don’t have to opt for the traditional seaside holiday either. Stay in your local areas of Yorkshire, Durham or Cumbria for example and discover a wealth of beautiful countryside and little known attractions.
There are literally hundreds of ways to be thrifty without compromising on fun! Whether you stay for a week or just for a day you can find exciting activities, whatever the weather and whatever the budget.
The brand new ‘Let’s Go with the Children’ Guide books cover 14 regional areas of England and offer endless ideas on places to go and things to do with the family this summer. Your biggest problem will be deciding where to go first!
Here are a few suggestions on how to nurture your child’s hidden passions or talents, whilst ensuring the whole family has hours of fun for less this summer, whatever the weather and whatever the budget!
Yorkshire, North East & North West - Free Places to Visit...
Hexham Park 01434 652121.
Small but perfectly formed Green Flag award winning park beside stunning Hexham Abbey with play and picnic areas, boarding and BMX facilities.
Newcastle Discovery Museum 0191 232 6789 www.twmuseums.org.uk.
Discover all about life in Newcastle and Tyneside, from maritime history and world changing science and technology through to fashion through the eras and military history. The museum is bursting with interactive displats; the perfect place to learn and have fun.
National Glass Centre, Sunderland 0191 515 5555 www.nationalglasscentre.com.
Take a fascinating tour, see glass artists at work and walk across the glass roof. Children’s workshops during school holidays. The National Glass Centre promotes the art, history and science of glass in a context that is relevant to place, through a programme of exhibitions, new commissions and education that is international in its scope and vision, and fosters meaningful debate and participation between artists, audiences and educators.
Hamsterley Forest 01388 488312 www.forestry.gov.uk/hamsterleyforest.
2000 hectares of mixed woodland lying between the Wear and Tees valleys on the edge of the North Pennines Area of Outstanding Natural Beauty.Hamsterley is a delightful oasis of broadleaved and coniferous woodland, sprawling along the sides of a sheltered valley. With way marked walks, cycle routes and horse riding trails, all levels of fitness and ability are catered for.
Consett to Sunderland Railway Path 0845 113 0065 www.sustrans.org.uk.
Part of the award winning C2C route, this popular traffic free cycle route is 21 miles long using former railway lines with lots of fascinating flora, fauna and public works of art along the way. There is plenty to visit along the route. Between Stanley and Beamish you pass the intriguingly named Hell Hole Wood, managed by the Woodland Trust and part of the Great North Community Forest.
Captain Cook Birthplace Museum, Middlesborough 01642 311211 www.captcook-ne.co.uk.
Experience life below the decks and find out about the world famous navigator through interactive displays. It is housed in a purpose-built building close to the granite urn marking the site of Cook’s birthplace cottage in Stewart Park, Marton, and Middlesbrough. The museum tells the story of one of the world’s greatest navigators and mariners through themed display galleries, temporary exhibitions, associated activities and events and a lively education programme.
Wynyard Woodland Park 01740 630011 www.wynyardwoodlandpark.org.uk.
Enjoying a beautiful woodland setting, this 180 acre park has many historical features. Facilities include a visitor centre, Planetarium, observatory, cycle ways, picnic spots, sculpture trail and play area. There is a railway carriage which acts as a classroom, a Virtual Visitor Centre Project and a new sculpture trail.
Robin Hood’s Bay, Whitby www.robin-hoods-bay.co.uk Take a net and a bucket to hunt for fossils on the rocky shores between Robin Hood’s Bay and Boggle Hole. Children must be supervised. Whether you are on a day trip or a weekly holiday to Robin Hood’s Bay, in a family group, finishing the coast to coast or simply getting away from it all, there is much to indulge in and certainly something for everyone. In addition to simply soaking up the scenery and relaxing in the surroundings, let your taste buds be tickled and your creative side tempted!
Lotherton Hall Estate, Leeds 01132 813259 www.leeds.gov.uk.
Explore the stone circle within the Boundary Trail, wander through one of Europe’s largest walk-through aviaries, admire the red deer or simply run off steam in the delightful grounds. Enjoy a great day out at Lotherton Hall and Estate and explore the fine country home within extensive grounds, including a red deer park, bird garden, nature trails, café and extensive family play area.
Manor Heath Park Jungle Experience and Walled Garden 01422 365631.
The Jungle Experience at Manor Heath Park, Halifax is a tropical oasis packed with fish, quail, terrapin and butterflies as well as a collection of plants from all over the world, where visitors can enjoy the all year round tropical atmosphere. The walled garden has many traditional and modern designs of planting, and the well kept park has a children's play area, picnic tables, mature trees and well kept gardens. A must for all the family!
Cusworth Hall Museum and Park, Doncaster 01302 782342 www.doncaster.gov.uk.
Discover lots of traditional toys in the childhood room and enjoy a picnic in the grounds. Cusworth Hall, Museum and Park re-opened to the public in May 2007, after several years of extensive restoration work.The Hall and its surrounding parkland have been transformed, stunning ceiling paintings in the Italianate Chapel have been revealed and restored, after being hidden under layers of paint for 50 years.The Great Kitchen, Bake House, Still Room and Laundry are also sometimes open to the public, giving a glimpse of what life was like 'below stairs'.
Graves Park Animal Farm, Sheffield 01142 582452 www.gravesparksheffield.info.
Get close to cuddly baby animals, domestic and rare breeds. In the park take the bird and sculpture trail and check out the play area. The farm has three distinct sections, just off the Hemsworth Road Car Park is a farmyard which houses the collections small animals such as Specialist Chickens, Guinea Pigs and Rabbits, the area is tarmac and accessible for disabled people. The farmyard is also home to the main barn where there are often baby animals, including piglets and lambs which is particularly popular with families.
Old Penny Memories Museum, Bridlington 01262 608400.
Old Penny Memories is one of the biggest collection of antique slot machines in England. Visitors to the museum can actually play the slot machines with the exchange of their money into old pennies. Admission is free, so you only pay if you play. Those visitors who are just wanting to look around are welcome to. The collection of machines and memorabilia dates from Edwardian 1920s up to the swinging 60s. You can feel the atmosphere of the era with the seaside organ music playing.
Spurn Lightship, Hull www.hullcc.gov.uk.
See how the crew lived aboard the ship which guided others into Hull’s port. Built in 1927, the 'Spurn' served for almost 50 years as a navigational aid in the treacherous River Humber. Now enjoying a leisurely mooring in Hull's attractive marina, she and her knowledgeable 'crew' are prepared to receive and welcome boarders who wish to explore.
Low Barns Nature Reserve, Durham 01388 488728.
Discover acres of beautiful woods, lakes and meadows including a visitor centre and observatory. Low Barns Nature Reserve is a 50 hectare wetland site with areas of mixed woodland and grassland. The Reserve is situated on an ex-gravel extraction site, which has been managed by Durham Wildlife Trust since operations ended in 1964.Wetland features include three lakes, interconnecting streams, a number of mature ponds, and a wet pasture. The River Wear also flows through the reserve.
Bowlees Picnic Area, Teesdale 0191 383 3594 www.durham.gov.uk.
Charming spot on the River Tees from where you can explore Gibson’s Cave, Summerhill Force and Low Force. There is a Visitor Centre run by Durham Wildlife Trust over the Bowlees Beck. One of the most attractive sections of the Pennine Way is only a 15-minute walk away. This section follows the River Tees midway between Middleton and Cauldron Snout. It can be reached by crossing the Tees on the Wynch Bridge, near Low Force.
Bowes Castle, Durham 0191 269 1200 www.bowes.org.uk/castle.
Explore the vast ruins of this open-access, three-storey, 12th century keep overlooking the River Greta. The present ruins of the castle are fifty-three feet in height, the remains being of the keep, surrounded on two sides by the remains of an original inner moat. There are few remains of the original bailey wall but it is possible to climb up part of the inside of the keep itself.
Locomotion: The National Railway Museum at Shildon 01388 777999 www.locomotion.uk.com.
Open-air museum with vehicles and interactive displays to explain the life of Timothy Hackworth and the development of railways. There’s a fun packed programme of special events throughout the year. For a fabulous day out, try their exclusive package culminating in driving a steam engine. There is an Easter Fair for all the family and events through school holidays.
Brimham Rocks, Harrogate 01423 780688 www.brimhamrocks.co.uk.
Take sturdy shoes to explore these spectacular rock formations including the Dancing Bear and Druid’s Writing Desk. Tracker packs available for over 5s. The curious rock formations at Brimham in Nidderdale are scattered over some 50 acres on Brimham Moor and provide a great variety of weird and wonderful shapes. Many of the gritty monstrosities suggest all manner of things, including elephants, hippos, bears, mushrooms and some are said to have associations with druids, Mother Shipton and even the Devil himself.
Whinlatter Forest Park 017687 78469 www.forestry.gov.uk.
Explore the mountain forest on foot or two wheels, orienteering, playground and picnic area. From April to August annually watch the Bassenthwaite Ospreys through the live nest camera or visit the Lake District Osprey Project and see the ospreys from the outdoor viewpoint or visit the exhibition and live video camera at Whinlatter.
Talkin Tarn Country Park, Cumbria 01697 73129 www.visitcumbria.com.
Stroll around this delightful glacial tarn, hire a boat in summer or enjoy the Boathouse Tearoom all year round. The tarn is glacial in origin, being formed about 10000 years ago, and is fed by underground streams. You can sail, windsurf, canoe or hire one of the wooden rowing boats. Fishing is available at the Tarn. There is a small camping and caravan site, and a permanent orienteering course is laid out around the park. The shop hires mountain bikes and there are suggested routes taking you through beautiful countryside. There is a 1.3 mile path round the tarn which is suitable for wheelchairs. The Boathouse Tea Room has superb views of the tarn, and a blazing log fire.
Aira Force Waterfall, Cumbria 01768 482067 www.visitcumbria.com.
A magnificent beauty spot, Aira Force and the Ullswater Valley are home to a large variety of wildlife, including Wordsworth's famous daffodils. Probably the most famous of the Lake District waterfalls, the main force falls 70 feet from below a stone footbridge. Aira Force provides a glimpse of a landscaped Victorian park with dramatic waterfalls, arboretum and rocks scenery.
Low Sizergh Barn, Lake District 015395 60426 www.lowsizerghbarn.co.uk.
There is a farm shop, tea room, craft gallery and farm trail on this organic dairy farm near the Lake District national park. The farm shop is filled with one of the best selections of local and speciality foods in Cumbria, with farm products -- our own organic Kendal cheese, organic eggs and ice cream made from our milk -- taking pride of place. Watch the milking from the gallery between 1.15-3.15pm.
Lancaster Canal Trust 01524 735504 www.lctrust.co.uk.
Run by enthusiasts, experience their narrow boat "Waterwitch" for a trip along the pretty northern reaches of the Lancaster Canal.
Abbott Lodge Jersey Ice Cream, Penrith 01931 712720 www.abbottlodgejerseyicecream.co.uk.
Meet the Jersey cows at this working farm, try the ice cream and work up an appetite in the indoor and outdoor playgrounds. The farm offers a tea room, function room for educational visits and you can watch the calves at their computerised feeding station. Sampling the ice cream is a must!
Alderley Edge, Cheshire 01625 584412 www.nationaltrust.org.uk.
Dramatic wooded hill rising out of the Cheshire plain. Legend says that kind Arthur lies sleeping underground. Explore mysterious trails and seek the wizards well. Alderley Edge is designated an SSSI for its geological interest. It has a long history of copper mining, going back to Bronze Age and Roman times. The mines are open twice a year, organised by the Derbyshire Caving Club. There are views across Cheshire and the Peak District and numerous paths through the oak and beech woodlands, including a link to Hare Hill.
Cheshire Workshops, Buwardsley 01829 770401 www.visitchester.com.
Discover candle making and watch working craftsmen. Lots of activities for children at weekends and school holidays including candle dipping, badge making, card making and pottery painting. Open 10-5pm Delamere Forest Park, Cheshire 01606 882167 Take a picnic and explore this extensive forest. Visitor centre and ranger-led activities throughout the year, with extra events during school holidays. Good network of cycle paths.
Delamere Forest Park is Cheshire's largest area of woodland and is a place for families to let off steam, escape the crowds and find peace in the heart of the forest.
Ainsdale on Sea Beach & Discovery Centre, Southport 0151 9342967.
Explore this extensive, clean beach and the maze-like sand dunes. Hire a free bicycle from the centre or take part in extreme kite activities.. Ainsdale-on-Sea is an ideal starting point for exploring Sefton's Natural Coast. A mile from the village of Ainsdale, it is Southport's main bathing beach with Lifeguards on duty during the summer season.The beach is one of the most popular on the coast and achieves the Seaside Award annually.
Wirral Country Park, Cheshire 0151 327 5145.
From the restored Hadlow Station, walk or cycle along 12 miles of footpaths, with shorter pathways into other areas. Fantastic bird watching, with great views over the Dee Estuary to North Wales. Visitor centre and guided walks. Wirral Country Park is a place of contrasts. Badgers and Foxes hunt the quieter parts, birds nest in the dense hedges or feed on the berries in winter, and you may see up to 10 kinds of butterfly in summer. Head for the 60 feet high, boulder-clay cliffs and look out over the Dee Estuary and you'll smell the tang of mud and salt, feel the sea breeze and get a sense of space quite unlike the enclosed, inland Wirral Way.
Greater Manchester Police Museum 0161 856 3287 www.gmp.police.uk.
Step back into unruly Victorian Manchester, see the wooden pillows in the Victorian cells, plus uniforms and equipment. Learn about forgery and forensic science.
Three Owls Bird Sanctuary & Reserve 01706 642162 www.threeowls.co.uk.
Relying heavily on donations, this sanctuary takes wild distressed birds, rehabilitates them and returns them to the wild. Between 300 and 1600 birds can be seen depending on the season.
Stockport Hat Works 0845 833 0975 www.hatworks.org.uk If you have ever wondered how hats were made, then this is the place for you. View the history of hat making from its origins through to mechanisation in the mills with working machines in action.
National Football Museum, Preston 01772 908442.
Investigate all aspects of the beautiful game including displays and Hall of Fame, Match of the Day Interactive and the Goalstriker Experience. Discover the best football museum in the world. Exciting moments, unforgettable memories, world famous objects, legendary players, 'hands-on' fun for all the family ... best of all it's FREE Hadrian’s Wall World Heritage Site 01434 332002 www.hadrians-wall.org.
This famous frontier was built by the order of the Roman Emperor Hadrian. Along its length are many museums, forts and temples. Follow the national trail, an 84 mile trail from coast to coast with links to 40 short walks. Steeped in history there are 14 major Roman sites, forts and museums and countless milecastles and turrets to explore, as well as many great non-Roman places on offer. Explore the stunning landscape of the World Heritage Site on foot, or cycle, at your own ease ‘Let’s Go with the Children’ Guide Books are published by Boomerang Family Ltd.
On Sale Date 23rd March 2009 Price: £3.75 Exclusive Offers from: Boden, Billy Elliott, Wicked, Grease, Fitness First, Fit for Sport, Sea Life Centres, Babyworld, Chiquito Restaurants.
Available from; Morrisons, Waitrose, Asda, Tesco, Sainsbury’s, Co-op, Martin McColl, WH Smith and Waterstones.
Planning the family holidays this year could present us all with some exciting challenges. The economic downturn not only makes the working week a little more worrisome but when you do have the chance to take a break, you feel like you still need to save money.
A recent survey suggested that more than half of us will stay in the UK this year and whilst this may not initially seem like the most appealing prospect, for families with children there is a world of adventure and hidden gems to be found on English soil – and a great deal of them are free of charge!
You don’t have to opt for the traditional seaside holiday either. Stay in your local areas of Yorkshire, Durham or Cumbria for example and discover a wealth of beautiful countryside and little known attractions.
There are literally hundreds of ways to be thrifty without compromising on fun! Whether you stay for a week or just for a day you can find exciting activities, whatever the weather and whatever the budget.
The brand new ‘Let’s Go with the Children’ Guide books cover 14 regional areas of England and offer endless ideas on places to go and things to do with the family this summer. Your biggest problem will be deciding where to go first!
Here are a few suggestions on how to nurture your child’s hidden passions or talents, whilst ensuring the whole family has hours of fun for less this summer, whatever the weather and whatever the budget!
Yorkshire, North East & North West - Free Places to Visit...
Hexham Park 01434 652121.
Small but perfectly formed Green Flag award winning park beside stunning Hexham Abbey with play and picnic areas, boarding and BMX facilities.
Newcastle Discovery Museum 0191 232 6789 www.twmuseums.org.uk.
Discover all about life in Newcastle and Tyneside, from maritime history and world changing science and technology through to fashion through the eras and military history. The museum is bursting with interactive displats; the perfect place to learn and have fun.
National Glass Centre, Sunderland 0191 515 5555 www.nationalglasscentre.com.
Take a fascinating tour, see glass artists at work and walk across the glass roof. Children’s workshops during school holidays. The National Glass Centre promotes the art, history and science of glass in a context that is relevant to place, through a programme of exhibitions, new commissions and education that is international in its scope and vision, and fosters meaningful debate and participation between artists, audiences and educators.
Hamsterley Forest 01388 488312 www.forestry.gov.uk/hamsterleyforest.
2000 hectares of mixed woodland lying between the Wear and Tees valleys on the edge of the North Pennines Area of Outstanding Natural Beauty.Hamsterley is a delightful oasis of broadleaved and coniferous woodland, sprawling along the sides of a sheltered valley. With way marked walks, cycle routes and horse riding trails, all levels of fitness and ability are catered for.
Consett to Sunderland Railway Path 0845 113 0065 www.sustrans.org.uk.
Part of the award winning C2C route, this popular traffic free cycle route is 21 miles long using former railway lines with lots of fascinating flora, fauna and public works of art along the way. There is plenty to visit along the route. Between Stanley and Beamish you pass the intriguingly named Hell Hole Wood, managed by the Woodland Trust and part of the Great North Community Forest.
Captain Cook Birthplace Museum, Middlesborough 01642 311211 www.captcook-ne.co.uk.
Experience life below the decks and find out about the world famous navigator through interactive displays. It is housed in a purpose-built building close to the granite urn marking the site of Cook’s birthplace cottage in Stewart Park, Marton, and Middlesbrough. The museum tells the story of one of the world’s greatest navigators and mariners through themed display galleries, temporary exhibitions, associated activities and events and a lively education programme.
Wynyard Woodland Park 01740 630011 www.wynyardwoodlandpark.org.uk.
Enjoying a beautiful woodland setting, this 180 acre park has many historical features. Facilities include a visitor centre, Planetarium, observatory, cycle ways, picnic spots, sculpture trail and play area. There is a railway carriage which acts as a classroom, a Virtual Visitor Centre Project and a new sculpture trail.
Robin Hood’s Bay, Whitby www.robin-hoods-bay.co.uk Take a net and a bucket to hunt for fossils on the rocky shores between Robin Hood’s Bay and Boggle Hole. Children must be supervised. Whether you are on a day trip or a weekly holiday to Robin Hood’s Bay, in a family group, finishing the coast to coast or simply getting away from it all, there is much to indulge in and certainly something for everyone. In addition to simply soaking up the scenery and relaxing in the surroundings, let your taste buds be tickled and your creative side tempted!
Lotherton Hall Estate, Leeds 01132 813259 www.leeds.gov.uk.
Explore the stone circle within the Boundary Trail, wander through one of Europe’s largest walk-through aviaries, admire the red deer or simply run off steam in the delightful grounds. Enjoy a great day out at Lotherton Hall and Estate and explore the fine country home within extensive grounds, including a red deer park, bird garden, nature trails, café and extensive family play area.
Manor Heath Park Jungle Experience and Walled Garden 01422 365631.
The Jungle Experience at Manor Heath Park, Halifax is a tropical oasis packed with fish, quail, terrapin and butterflies as well as a collection of plants from all over the world, where visitors can enjoy the all year round tropical atmosphere. The walled garden has many traditional and modern designs of planting, and the well kept park has a children's play area, picnic tables, mature trees and well kept gardens. A must for all the family!
Cusworth Hall Museum and Park, Doncaster 01302 782342 www.doncaster.gov.uk.
Discover lots of traditional toys in the childhood room and enjoy a picnic in the grounds. Cusworth Hall, Museum and Park re-opened to the public in May 2007, after several years of extensive restoration work.The Hall and its surrounding parkland have been transformed, stunning ceiling paintings in the Italianate Chapel have been revealed and restored, after being hidden under layers of paint for 50 years.The Great Kitchen, Bake House, Still Room and Laundry are also sometimes open to the public, giving a glimpse of what life was like 'below stairs'.
Graves Park Animal Farm, Sheffield 01142 582452 www.gravesparksheffield.info.
Get close to cuddly baby animals, domestic and rare breeds. In the park take the bird and sculpture trail and check out the play area. The farm has three distinct sections, just off the Hemsworth Road Car Park is a farmyard which houses the collections small animals such as Specialist Chickens, Guinea Pigs and Rabbits, the area is tarmac and accessible for disabled people. The farmyard is also home to the main barn where there are often baby animals, including piglets and lambs which is particularly popular with families.
Old Penny Memories Museum, Bridlington 01262 608400.
Old Penny Memories is one of the biggest collection of antique slot machines in England. Visitors to the museum can actually play the slot machines with the exchange of their money into old pennies. Admission is free, so you only pay if you play. Those visitors who are just wanting to look around are welcome to. The collection of machines and memorabilia dates from Edwardian 1920s up to the swinging 60s. You can feel the atmosphere of the era with the seaside organ music playing.
Spurn Lightship, Hull www.hullcc.gov.uk.
See how the crew lived aboard the ship which guided others into Hull’s port. Built in 1927, the 'Spurn' served for almost 50 years as a navigational aid in the treacherous River Humber. Now enjoying a leisurely mooring in Hull's attractive marina, she and her knowledgeable 'crew' are prepared to receive and welcome boarders who wish to explore.
Low Barns Nature Reserve, Durham 01388 488728.
Discover acres of beautiful woods, lakes and meadows including a visitor centre and observatory. Low Barns Nature Reserve is a 50 hectare wetland site with areas of mixed woodland and grassland. The Reserve is situated on an ex-gravel extraction site, which has been managed by Durham Wildlife Trust since operations ended in 1964.Wetland features include three lakes, interconnecting streams, a number of mature ponds, and a wet pasture. The River Wear also flows through the reserve.
Bowlees Picnic Area, Teesdale 0191 383 3594 www.durham.gov.uk.
Charming spot on the River Tees from where you can explore Gibson’s Cave, Summerhill Force and Low Force. There is a Visitor Centre run by Durham Wildlife Trust over the Bowlees Beck. One of the most attractive sections of the Pennine Way is only a 15-minute walk away. This section follows the River Tees midway between Middleton and Cauldron Snout. It can be reached by crossing the Tees on the Wynch Bridge, near Low Force.
Bowes Castle, Durham 0191 269 1200 www.bowes.org.uk/castle.
Explore the vast ruins of this open-access, three-storey, 12th century keep overlooking the River Greta. The present ruins of the castle are fifty-three feet in height, the remains being of the keep, surrounded on two sides by the remains of an original inner moat. There are few remains of the original bailey wall but it is possible to climb up part of the inside of the keep itself.
Locomotion: The National Railway Museum at Shildon 01388 777999 www.locomotion.uk.com.
Open-air museum with vehicles and interactive displays to explain the life of Timothy Hackworth and the development of railways. There’s a fun packed programme of special events throughout the year. For a fabulous day out, try their exclusive package culminating in driving a steam engine. There is an Easter Fair for all the family and events through school holidays.
Brimham Rocks, Harrogate 01423 780688 www.brimhamrocks.co.uk.
Take sturdy shoes to explore these spectacular rock formations including the Dancing Bear and Druid’s Writing Desk. Tracker packs available for over 5s. The curious rock formations at Brimham in Nidderdale are scattered over some 50 acres on Brimham Moor and provide a great variety of weird and wonderful shapes. Many of the gritty monstrosities suggest all manner of things, including elephants, hippos, bears, mushrooms and some are said to have associations with druids, Mother Shipton and even the Devil himself.
Whinlatter Forest Park 017687 78469 www.forestry.gov.uk.
Explore the mountain forest on foot or two wheels, orienteering, playground and picnic area. From April to August annually watch the Bassenthwaite Ospreys through the live nest camera or visit the Lake District Osprey Project and see the ospreys from the outdoor viewpoint or visit the exhibition and live video camera at Whinlatter.
Talkin Tarn Country Park, Cumbria 01697 73129 www.visitcumbria.com.
Stroll around this delightful glacial tarn, hire a boat in summer or enjoy the Boathouse Tearoom all year round. The tarn is glacial in origin, being formed about 10000 years ago, and is fed by underground streams. You can sail, windsurf, canoe or hire one of the wooden rowing boats. Fishing is available at the Tarn. There is a small camping and caravan site, and a permanent orienteering course is laid out around the park. The shop hires mountain bikes and there are suggested routes taking you through beautiful countryside. There is a 1.3 mile path round the tarn which is suitable for wheelchairs. The Boathouse Tea Room has superb views of the tarn, and a blazing log fire.
Aira Force Waterfall, Cumbria 01768 482067 www.visitcumbria.com.
A magnificent beauty spot, Aira Force and the Ullswater Valley are home to a large variety of wildlife, including Wordsworth's famous daffodils. Probably the most famous of the Lake District waterfalls, the main force falls 70 feet from below a stone footbridge. Aira Force provides a glimpse of a landscaped Victorian park with dramatic waterfalls, arboretum and rocks scenery.
Low Sizergh Barn, Lake District 015395 60426 www.lowsizerghbarn.co.uk.
There is a farm shop, tea room, craft gallery and farm trail on this organic dairy farm near the Lake District national park. The farm shop is filled with one of the best selections of local and speciality foods in Cumbria, with farm products -- our own organic Kendal cheese, organic eggs and ice cream made from our milk -- taking pride of place. Watch the milking from the gallery between 1.15-3.15pm.
Lancaster Canal Trust 01524 735504 www.lctrust.co.uk.
Run by enthusiasts, experience their narrow boat "Waterwitch" for a trip along the pretty northern reaches of the Lancaster Canal.
Abbott Lodge Jersey Ice Cream, Penrith 01931 712720 www.abbottlodgejerseyicecream.co.uk.
Meet the Jersey cows at this working farm, try the ice cream and work up an appetite in the indoor and outdoor playgrounds. The farm offers a tea room, function room for educational visits and you can watch the calves at their computerised feeding station. Sampling the ice cream is a must!
Alderley Edge, Cheshire 01625 584412 www.nationaltrust.org.uk.
Dramatic wooded hill rising out of the Cheshire plain. Legend says that kind Arthur lies sleeping underground. Explore mysterious trails and seek the wizards well. Alderley Edge is designated an SSSI for its geological interest. It has a long history of copper mining, going back to Bronze Age and Roman times. The mines are open twice a year, organised by the Derbyshire Caving Club. There are views across Cheshire and the Peak District and numerous paths through the oak and beech woodlands, including a link to Hare Hill.
Cheshire Workshops, Buwardsley 01829 770401 www.visitchester.com.
Discover candle making and watch working craftsmen. Lots of activities for children at weekends and school holidays including candle dipping, badge making, card making and pottery painting. Open 10-5pm Delamere Forest Park, Cheshire 01606 882167 Take a picnic and explore this extensive forest. Visitor centre and ranger-led activities throughout the year, with extra events during school holidays. Good network of cycle paths.
Delamere Forest Park is Cheshire's largest area of woodland and is a place for families to let off steam, escape the crowds and find peace in the heart of the forest.
Ainsdale on Sea Beach & Discovery Centre, Southport 0151 9342967.
Explore this extensive, clean beach and the maze-like sand dunes. Hire a free bicycle from the centre or take part in extreme kite activities.. Ainsdale-on-Sea is an ideal starting point for exploring Sefton's Natural Coast. A mile from the village of Ainsdale, it is Southport's main bathing beach with Lifeguards on duty during the summer season.The beach is one of the most popular on the coast and achieves the Seaside Award annually.
Wirral Country Park, Cheshire 0151 327 5145.
From the restored Hadlow Station, walk or cycle along 12 miles of footpaths, with shorter pathways into other areas. Fantastic bird watching, with great views over the Dee Estuary to North Wales. Visitor centre and guided walks. Wirral Country Park is a place of contrasts. Badgers and Foxes hunt the quieter parts, birds nest in the dense hedges or feed on the berries in winter, and you may see up to 10 kinds of butterfly in summer. Head for the 60 feet high, boulder-clay cliffs and look out over the Dee Estuary and you'll smell the tang of mud and salt, feel the sea breeze and get a sense of space quite unlike the enclosed, inland Wirral Way.
Greater Manchester Police Museum 0161 856 3287 www.gmp.police.uk.
Step back into unruly Victorian Manchester, see the wooden pillows in the Victorian cells, plus uniforms and equipment. Learn about forgery and forensic science.
Three Owls Bird Sanctuary & Reserve 01706 642162 www.threeowls.co.uk.
Relying heavily on donations, this sanctuary takes wild distressed birds, rehabilitates them and returns them to the wild. Between 300 and 1600 birds can be seen depending on the season.
Stockport Hat Works 0845 833 0975 www.hatworks.org.uk If you have ever wondered how hats were made, then this is the place for you. View the history of hat making from its origins through to mechanisation in the mills with working machines in action.
National Football Museum, Preston 01772 908442.
Investigate all aspects of the beautiful game including displays and Hall of Fame, Match of the Day Interactive and the Goalstriker Experience. Discover the best football museum in the world. Exciting moments, unforgettable memories, world famous objects, legendary players, 'hands-on' fun for all the family ... best of all it's FREE Hadrian’s Wall World Heritage Site 01434 332002 www.hadrians-wall.org.
This famous frontier was built by the order of the Roman Emperor Hadrian. Along its length are many museums, forts and temples. Follow the national trail, an 84 mile trail from coast to coast with links to 40 short walks. Steeped in history there are 14 major Roman sites, forts and museums and countless milecastles and turrets to explore, as well as many great non-Roman places on offer. Explore the stunning landscape of the World Heritage Site on foot, or cycle, at your own ease ‘Let’s Go with the Children’ Guide Books are published by Boomerang Family Ltd.
On Sale Date 23rd March 2009 Price: £3.75 Exclusive Offers from: Boden, Billy Elliott, Wicked, Grease, Fitness First, Fit for Sport, Sea Life Centres, Babyworld, Chiquito Restaurants.
Available from; Morrisons, Waitrose, Asda, Tesco, Sainsbury’s, Co-op, Martin McColl, WH Smith and Waterstones.
08 March 2009
'Slow progress' for rail access
Story from BBC NEWS:
Watch Video
Plans to make London railway stations more accessible to disabled people are behind schedule.
Thirteen stations should be wheelchair accessible by the end of 2009 but only five have so far been completed, Putney MP Justine Greening found.
Charity Scope said: "Accessible public transport is crucial to enable disabled people to go about daily business."
The Department for Transport said accessibility would be improved in a total of 40 London stations by 2015.
'Shambles'
Since 2006 the Department for Transport (DfT) has given Network Rail £370m to carry out accessibility upgrades to stations as part of its Access For All scheme.
But in Parliamentary questions the DfT said planned upgrades had only been carried out on five of the 13 London stations, with a further three "nearing completion".
Miss Greening, Conservative MP for Putney and shadow minister for communities and local government, said the strategy was a "shambles".
"The government's botched handling of this scheme is a disgrace," she said.
"It is crucial to make public transport accessible to all, but yet again this government has been big on rhetoric to Londoners, but has failed to deliver."
“ Wheelchair users aren't going to go away ”
Rosemary Bolinger,
disability campaigner
Access has been improved at Balham, Herne Hill, Kingston, Purley and Orpington stations.
Disability campaigner Rosemary Bolinger said: "We've got the Olympics coming to London in 2012 and the Paralympics will also be coming.
"There are going to be more and more people around in wheelchairs, so it needs to be done."
Charity Scope added that better access for the disabled also eases access for the elderly and parents with baby buggies.
A DfT spokesman said plans to improve station access were being "taken forward".
"We are committed to delivering excellent services for all passengers at every stage of their rail journey," a DfT spokesman said.
"In total, 40 stations in London boroughs will have benefited by 2015 - five of these are completed, three are nearing completion and the remainder are in the design and development process."
Network Rail did not comment.
Watch Video
Plans to make London railway stations more accessible to disabled people are behind schedule.
Thirteen stations should be wheelchair accessible by the end of 2009 but only five have so far been completed, Putney MP Justine Greening found.
Charity Scope said: "Accessible public transport is crucial to enable disabled people to go about daily business."
The Department for Transport said accessibility would be improved in a total of 40 London stations by 2015.
'Shambles'
Since 2006 the Department for Transport (DfT) has given Network Rail £370m to carry out accessibility upgrades to stations as part of its Access For All scheme.
But in Parliamentary questions the DfT said planned upgrades had only been carried out on five of the 13 London stations, with a further three "nearing completion".
Miss Greening, Conservative MP for Putney and shadow minister for communities and local government, said the strategy was a "shambles".
"The government's botched handling of this scheme is a disgrace," she said.
"It is crucial to make public transport accessible to all, but yet again this government has been big on rhetoric to Londoners, but has failed to deliver."
“ Wheelchair users aren't going to go away ”
Rosemary Bolinger,
disability campaigner
Access has been improved at Balham, Herne Hill, Kingston, Purley and Orpington stations.
Disability campaigner Rosemary Bolinger said: "We've got the Olympics coming to London in 2012 and the Paralympics will also be coming.
"There are going to be more and more people around in wheelchairs, so it needs to be done."
Charity Scope added that better access for the disabled also eases access for the elderly and parents with baby buggies.
A DfT spokesman said plans to improve station access were being "taken forward".
"We are committed to delivering excellent services for all passengers at every stage of their rail journey," a DfT spokesman said.
"In total, 40 stations in London boroughs will have benefited by 2015 - five of these are completed, three are nearing completion and the remainder are in the design and development process."
Network Rail did not comment.
World’s oldest conjoined twins
The Sun |Features
By EMMA COX
Published: 07 Mar 2009
WHEN Maureen Galyon gave birth in 1951, she had no idea she was expecting two babies - let alone conjoined twins.
The tots, joined at the torso, were not expected to survive the night as baffled doctors tried to work out if they could be separated.
Now, at 57, Ronnie and Donnie are the world’s oldest conjoined twins and have amazed the medic world by hanging onto life for so long.
And, as their health declines and they near their dying days, the pair have opened their doors to a documentary team to reveal the secrets of their extraordinary life together.
Although every day is a struggle as the men have to coordinate the simplest of tasks, they have a close, loving relationship and are able to live together in their own home in Dayton, Ohio.
The affectionate documentary, Extraordinary People: The World’s Oldest Conjoined Twins on Five on March 18 at 9pm, will bring hope to British mum Lisa Chamberlain who is expecting conjoined twins as it shows it IS possible for the babies to not only survive but to live a happy life.
Ronnie and Donnie’s younger brother Jim says: “They have four arms and four legs to coordinate and that takes years of practice. When they want to move they look at each other - it's not like it's telepathy but they think so much in harmony. It's fascinating.
“For things like shaving, between the two of them they don't really need a mirror, they take care of that by shaving each other’s faces.
“That's what you call a good bond with your twin brother.
“They go out to their favourite diner once a month and everybody treats them normally, as if they are two separate people, which is what they are.
“And they have their own possessions. Even if they look identical, there is two of everything, because it’s important that they keep their own identity.”
The pair have learnt to do all their own household chores using one hand each - and Ronnie even calls Donnie “the little wife” because he is so domesticated.
And though Donnie is scared of the dark, comfort is always close at hand as Ronnie gives him a brotherly cuddle in the bed they share.
But life joined to your twin brother is not always happy.
The pair - who have completely opposite personalities - get so irritated with each other they often have physical FIGHTS.
Jim says: “They don't like the same shows so usually the biggest arguments are over the TV even though they have two now. If one turns the volume up on his TV, the other turns the volume up even louder.
Close ... with brother Jim and his wife Mary
“The last time they got into it, four or five months ago, Ronnie had a shiner.
“They get mad at each other like any other brother, but they can’t go in the other room and cool off. It gets so intense and angry, it usually takes literally four or five days to simmer.
“Ronnie's happy go lucky, no cares in the world. Donnie is very articulate, very hard headed, very stubborn.
“When it finally runs its course, they’ll start crying because it’s over and they’ll both be bawling their little hearts out. One will reach over and kiss the other on the forehead and they've made up. When it's done, it's done.”
Their doctor, Glenn Kwiat, adds: “The closeness that Ronnie and Donnie share is not always a positive. If you think of somebody, even the person you care about most, and imagine you were chained to them 24 hours a day, never being able to get away - their whole life is a compromise.
“I’ll go over there and there’ll be black and blue eyes. I actually had to sew one of them up because the other one had punched him.”
Other problems include the twins’ lifelong desire for a physical relationship with a woman - and even a baby.
Although the brothers have separate hearts, lungs and stomachs, their vital organs join in the digestive tracts - so they have one lower intestine and one set of sexual organs.
Jim says: “They would love to have been able to date and marry and father children, but having just one set of sexual organs, who would be the father? It gets a little quirky, does it not?”.
Dr Kwiat adds: “Their male function has been normal. And that's something that, when they were younger, had to be addressed because they had the normal male urges and the normal hormones. Trying to channel those so they didn't become aggressive or frustrated was an issue.”
When the twins were born, they made medical history. Conjoined twins make just one in 100,000 births. Of those, up to 60 per cent are stillborn.
Ronnie and Donnie were kept in the Saint Elizabeth Hospital for 29 months as fascinated doctors observed and worked out if they could be separated.
But Jim says the chances of Ronnie surviving a separation were thought to be minimal - so, Maureen having rejected the children, their father Wesley was left to make the decision on his own. He decided not to risk it.
He says: “Their lower intestine is one. One penis, one rectum. Donnie has control of that. Therefore if they separate them, Ronnie would have to be reconstructed. And you're talking about the 1950s - that probably wouldn't have been too likely. That decision was made that if they both can't make it, we're not going to proceed with that.”
Wesley was inundated with requests for the twins to star in freak shows - and although he resisted at first, the cost of looking after the boys and their seven siblings soon meant he had to relent.
They had already been banned from schools as teachers said they were “too distracting” for other pupils - so they have never learnt to read or write, one of their biggest regrets in life.
Jim says: “You’d get people parked out the front trying to get a peek at them. You'd get, for want of a better word, curiosity seekers. Understandably, that's something you're not going to see all the time, two people stuck together. That's confounding. But it meant it wasn't a normal life for us.
“My dad had this trailer and Ronnie and Donnie would sit there watching TV and people could pay to watch them.
“People would say, “That's offensive, having them making a living like that”. Well, what are they supposed to do? It's not like they can go out and drive a truck for a living.
“Dad made a living through Donnie and Ronnie, and supported nine kids on that. We're proud of him for that.”
In 1991 Ronnie and Donnie retired aged 39 and bought a two-bedroomed house with the money they made.
Now, suffering scoliosis and arthritis as well as being dangerously overweight, the pair can stand only for short periods and rarely venture outside.
Jim and Dr Kwiat are preparing themselves for the fact Ronnie and Donnie may not survive much longer.
Dr Kwiat says: “When you look at the literature on conjoined twins, when one dies, it's often immediate that the other one dies. But in other cases it can be 17 or 18 hours before the other one dies.
“At that point of life, you’ve been joined to someone your whole life and they’re dead, and you know what's coming. If that happened to Ronnie and Donnie I think you would have to sedate the other one until nature takes its course.”
But however their life comes to an end, there are no regrets for Ronnie and Donnie, who believe they have had a happy life.
Touchingly, Ronnie says: “Our belief is this - let God separate us. Let the good Lord separate us. God made us, let God separate us, not using surgical knives.”
By EMMA COX
Published: 07 Mar 2009
WHEN Maureen Galyon gave birth in 1951, she had no idea she was expecting two babies - let alone conjoined twins.
The tots, joined at the torso, were not expected to survive the night as baffled doctors tried to work out if they could be separated.
Now, at 57, Ronnie and Donnie are the world’s oldest conjoined twins and have amazed the medic world by hanging onto life for so long.
And, as their health declines and they near their dying days, the pair have opened their doors to a documentary team to reveal the secrets of their extraordinary life together.
Although every day is a struggle as the men have to coordinate the simplest of tasks, they have a close, loving relationship and are able to live together in their own home in Dayton, Ohio.
The affectionate documentary, Extraordinary People: The World’s Oldest Conjoined Twins on Five on March 18 at 9pm, will bring hope to British mum Lisa Chamberlain who is expecting conjoined twins as it shows it IS possible for the babies to not only survive but to live a happy life.
Ronnie and Donnie’s younger brother Jim says: “They have four arms and four legs to coordinate and that takes years of practice. When they want to move they look at each other - it's not like it's telepathy but they think so much in harmony. It's fascinating.
“For things like shaving, between the two of them they don't really need a mirror, they take care of that by shaving each other’s faces.
“That's what you call a good bond with your twin brother.
“They go out to their favourite diner once a month and everybody treats them normally, as if they are two separate people, which is what they are.
“And they have their own possessions. Even if they look identical, there is two of everything, because it’s important that they keep their own identity.”
The pair have learnt to do all their own household chores using one hand each - and Ronnie even calls Donnie “the little wife” because he is so domesticated.
And though Donnie is scared of the dark, comfort is always close at hand as Ronnie gives him a brotherly cuddle in the bed they share.
But life joined to your twin brother is not always happy.
The pair - who have completely opposite personalities - get so irritated with each other they often have physical FIGHTS.
Jim says: “They don't like the same shows so usually the biggest arguments are over the TV even though they have two now. If one turns the volume up on his TV, the other turns the volume up even louder.
Close ... with brother Jim and his wife Mary
“The last time they got into it, four or five months ago, Ronnie had a shiner.
“They get mad at each other like any other brother, but they can’t go in the other room and cool off. It gets so intense and angry, it usually takes literally four or five days to simmer.
“Ronnie's happy go lucky, no cares in the world. Donnie is very articulate, very hard headed, very stubborn.
“When it finally runs its course, they’ll start crying because it’s over and they’ll both be bawling their little hearts out. One will reach over and kiss the other on the forehead and they've made up. When it's done, it's done.”
Their doctor, Glenn Kwiat, adds: “The closeness that Ronnie and Donnie share is not always a positive. If you think of somebody, even the person you care about most, and imagine you were chained to them 24 hours a day, never being able to get away - their whole life is a compromise.
“I’ll go over there and there’ll be black and blue eyes. I actually had to sew one of them up because the other one had punched him.”
Other problems include the twins’ lifelong desire for a physical relationship with a woman - and even a baby.
Although the brothers have separate hearts, lungs and stomachs, their vital organs join in the digestive tracts - so they have one lower intestine and one set of sexual organs.
Jim says: “They would love to have been able to date and marry and father children, but having just one set of sexual organs, who would be the father? It gets a little quirky, does it not?”.
Dr Kwiat adds: “Their male function has been normal. And that's something that, when they were younger, had to be addressed because they had the normal male urges and the normal hormones. Trying to channel those so they didn't become aggressive or frustrated was an issue.”
When the twins were born, they made medical history. Conjoined twins make just one in 100,000 births. Of those, up to 60 per cent are stillborn.
Ronnie and Donnie were kept in the Saint Elizabeth Hospital for 29 months as fascinated doctors observed and worked out if they could be separated.
But Jim says the chances of Ronnie surviving a separation were thought to be minimal - so, Maureen having rejected the children, their father Wesley was left to make the decision on his own. He decided not to risk it.
He says: “Their lower intestine is one. One penis, one rectum. Donnie has control of that. Therefore if they separate them, Ronnie would have to be reconstructed. And you're talking about the 1950s - that probably wouldn't have been too likely. That decision was made that if they both can't make it, we're not going to proceed with that.”
Wesley was inundated with requests for the twins to star in freak shows - and although he resisted at first, the cost of looking after the boys and their seven siblings soon meant he had to relent.
They had already been banned from schools as teachers said they were “too distracting” for other pupils - so they have never learnt to read or write, one of their biggest regrets in life.
Jim says: “You’d get people parked out the front trying to get a peek at them. You'd get, for want of a better word, curiosity seekers. Understandably, that's something you're not going to see all the time, two people stuck together. That's confounding. But it meant it wasn't a normal life for us.
“My dad had this trailer and Ronnie and Donnie would sit there watching TV and people could pay to watch them.
“People would say, “That's offensive, having them making a living like that”. Well, what are they supposed to do? It's not like they can go out and drive a truck for a living.
“Dad made a living through Donnie and Ronnie, and supported nine kids on that. We're proud of him for that.”
In 1991 Ronnie and Donnie retired aged 39 and bought a two-bedroomed house with the money they made.
Now, suffering scoliosis and arthritis as well as being dangerously overweight, the pair can stand only for short periods and rarely venture outside.
Jim and Dr Kwiat are preparing themselves for the fact Ronnie and Donnie may not survive much longer.
Dr Kwiat says: “When you look at the literature on conjoined twins, when one dies, it's often immediate that the other one dies. But in other cases it can be 17 or 18 hours before the other one dies.
“At that point of life, you’ve been joined to someone your whole life and they’re dead, and you know what's coming. If that happened to Ronnie and Donnie I think you would have to sedate the other one until nature takes its course.”
But however their life comes to an end, there are no regrets for Ronnie and Donnie, who believe they have had a happy life.
Touchingly, Ronnie says: “Our belief is this - let God separate us. Let the good Lord separate us. God made us, let God separate us, not using surgical knives.”
07 March 2009
Mobility matters - The Northern Echo
The recent death of Ivan Cameron from cerebral palsy has raised the profile of this devastating condition.
Health Editor Barry Nelson visits a charity providing vital support for North-East children.
IN a mobile classroom on the edge of a County Durham town something remarkable is happening.
Kneeling on a floor pad and with arms outstretched, a teacher trained at the world-famous Peto Institute, in Budapest, is working with a severely disabled child. By gently guiding the child’s movements, encouraging him to stretch, reach out and grasp toys, the Hungarian “conductor” is able to gradually increase his mobility and flexibility.
Throughout the hour-long session, the conductor also talks and sings to the child, who responds with gurgles and cries of pleasure. But it is not all fun. From time to time the child grimaces as he struggles to complete a movement that an able-bodied youngster would find child’s play.
But for a youngster with cerebral palsy, just grasping a toy rattle and lifting it into the air takes a huge, unimaginable effort.
Every day children from all over the North-East are brought by their parents to the Heel & Toe charity on the outskirts of Spennymoor, so conductive education therapist Zsuzsanna Luteran can work her magic. Remarkably, the charity offers such therapy free of charge to families in the North-East who need it. With access to NHS physiotherapists strictly rationed, this has proved to be a lifeline for desperate families. In every case the 34 children who have regular conductive education sessions at Heel & Toe have benefited and made steady progress.
Now the charity is urgently appealing to the public to help them expand their services.
Zsuzsanna is an exponent of conductive education, a now internationally famous method of improving motor skills of children with cerebral palsy, spina bifida and other motor disorders. Developed at the Peto Institute more than 40 years ago, conductive education is now widely used by therapists across the world.
The institute’s website explains that conductive education is not a cure but “a method of exercises and education… performed intensively, five hours per day, five days per week, in small groups”.
ZSUZSANNA is delighted that families who use Heel & Toe keep coming back for more. “I am very happy that all of the parents of the children I teach have kept on coming back since October,” she says.
In every child she works with, Zsuzsanna says there has been progress. “I have seen positive changes in all of them, especially the younger ones,” she says.
Zsuzsanna says one of her clients, a ten-month-old baby, was like “a big piece of stone” when he was first brought to the centre. “At first he was unable to move, but now he can roll, creep and even sit up. His mum said she never expected him to do that.”
Each lesson is a mixture of group exercises and intensive, one-to-one sessions. “People sometimes think conductors are just physiotherapists, but it is much more,” says Zsuzsanna. “It covers every aspect of the person. It is everything – moving, speaking, eating, building up confidence – and they have to do this at home as well.”
A regular at Heel & Toe is twoyear- old Max, whose mother Leeann Harker comes from Crook. The very fact Max is alive is something of a miracle. “I was supposed to have twins in March,” says Leeann, “but they came very prematurely in November.
Michael died after four days and Max suffered from a massive bleed.”
After 100 days in hospital and a series of operations, she was able to bring Max home. Diagnosed with a severe form of cerebral palsy, experts warned her that he would probably be in a vegetative state. But while Max finds it impossible to perform most of the tasks a “normal” two-year-old could do, Leeann says he is making progress and can still communicate.
“He knows what he wants and he knows how to tell me. If he is hungry he sticks his tongue out. He can be very cheeky,” she says.
The conductive education sessions have been “absolutely fantastic”, according to Leeann. “He used to make little fists and hold them tight. He can now open his hands more easily.
He also tries to creep now and he can almost sit up on his own. We would be lost without this place. I just hope they raise all the money they need.”
Centre manager Doug Long says the charity is “quite unique” in the North-East in offering free conductive education. However, Heel & Toe is now “at saturation level” and needs to appoint a second conductor.
Recently the charity was awarded £9,027 of National Lottery funds to spend on specialist equipment.
That’s a big help, but the charity needs to expand.
“We need to raise £86,000 a year at the moment, but we have big plans for the future. By the end of 2012 we plan to spend £250,000,” says Doug.
The recent tragic death of Conservative leader David Cameron’s six-year-old son Ivan – who had a severe form of cerebral palsy – has raised the profile of the condition among the general public. But Doug says the charity needs to do more.
Later this month Heel & Toe is holding its first spring charity ball at The Swallow Three Tuns Hotel, in Durham City. A black tie charity night, subtitled Black Ties, Big Hearts, the event will include a fourcourse meal, guest speaker The Northern Echo columnist, Mike Amos, live music from a North-East band, followed by a disco.
Tickets – at £40 per person – are available by table or individually.
“Raising money has got more difficult for charities recently and we really need people to get behind us,”
says Doug. “Hopefully our black tie dinner will become an annual event.
We certainly could do with the money,” he laughs.
■ The charity event is on Saturday, March 21. For tickets ring 0844-335-0512 or 01388- 890775 or email info@heeland toe.org.uk
Health Editor Barry Nelson visits a charity providing vital support for North-East children.
IN a mobile classroom on the edge of a County Durham town something remarkable is happening.
Kneeling on a floor pad and with arms outstretched, a teacher trained at the world-famous Peto Institute, in Budapest, is working with a severely disabled child. By gently guiding the child’s movements, encouraging him to stretch, reach out and grasp toys, the Hungarian “conductor” is able to gradually increase his mobility and flexibility.
Throughout the hour-long session, the conductor also talks and sings to the child, who responds with gurgles and cries of pleasure. But it is not all fun. From time to time the child grimaces as he struggles to complete a movement that an able-bodied youngster would find child’s play.
But for a youngster with cerebral palsy, just grasping a toy rattle and lifting it into the air takes a huge, unimaginable effort.
Every day children from all over the North-East are brought by their parents to the Heel & Toe charity on the outskirts of Spennymoor, so conductive education therapist Zsuzsanna Luteran can work her magic. Remarkably, the charity offers such therapy free of charge to families in the North-East who need it. With access to NHS physiotherapists strictly rationed, this has proved to be a lifeline for desperate families. In every case the 34 children who have regular conductive education sessions at Heel & Toe have benefited and made steady progress.
Now the charity is urgently appealing to the public to help them expand their services.
Zsuzsanna is an exponent of conductive education, a now internationally famous method of improving motor skills of children with cerebral palsy, spina bifida and other motor disorders. Developed at the Peto Institute more than 40 years ago, conductive education is now widely used by therapists across the world.
The institute’s website explains that conductive education is not a cure but “a method of exercises and education… performed intensively, five hours per day, five days per week, in small groups”.
ZSUZSANNA is delighted that families who use Heel & Toe keep coming back for more. “I am very happy that all of the parents of the children I teach have kept on coming back since October,” she says.
In every child she works with, Zsuzsanna says there has been progress. “I have seen positive changes in all of them, especially the younger ones,” she says.
Zsuzsanna says one of her clients, a ten-month-old baby, was like “a big piece of stone” when he was first brought to the centre. “At first he was unable to move, but now he can roll, creep and even sit up. His mum said she never expected him to do that.”
Each lesson is a mixture of group exercises and intensive, one-to-one sessions. “People sometimes think conductors are just physiotherapists, but it is much more,” says Zsuzsanna. “It covers every aspect of the person. It is everything – moving, speaking, eating, building up confidence – and they have to do this at home as well.”
A regular at Heel & Toe is twoyear- old Max, whose mother Leeann Harker comes from Crook. The very fact Max is alive is something of a miracle. “I was supposed to have twins in March,” says Leeann, “but they came very prematurely in November.
Michael died after four days and Max suffered from a massive bleed.”
After 100 days in hospital and a series of operations, she was able to bring Max home. Diagnosed with a severe form of cerebral palsy, experts warned her that he would probably be in a vegetative state. But while Max finds it impossible to perform most of the tasks a “normal” two-year-old could do, Leeann says he is making progress and can still communicate.
“He knows what he wants and he knows how to tell me. If he is hungry he sticks his tongue out. He can be very cheeky,” she says.
The conductive education sessions have been “absolutely fantastic”, according to Leeann. “He used to make little fists and hold them tight. He can now open his hands more easily.
He also tries to creep now and he can almost sit up on his own. We would be lost without this place. I just hope they raise all the money they need.”
Centre manager Doug Long says the charity is “quite unique” in the North-East in offering free conductive education. However, Heel & Toe is now “at saturation level” and needs to appoint a second conductor.
Recently the charity was awarded £9,027 of National Lottery funds to spend on specialist equipment.
That’s a big help, but the charity needs to expand.
“We need to raise £86,000 a year at the moment, but we have big plans for the future. By the end of 2012 we plan to spend £250,000,” says Doug.
The recent tragic death of Conservative leader David Cameron’s six-year-old son Ivan – who had a severe form of cerebral palsy – has raised the profile of the condition among the general public. But Doug says the charity needs to do more.
Later this month Heel & Toe is holding its first spring charity ball at The Swallow Three Tuns Hotel, in Durham City. A black tie charity night, subtitled Black Ties, Big Hearts, the event will include a fourcourse meal, guest speaker The Northern Echo columnist, Mike Amos, live music from a North-East band, followed by a disco.
Tickets – at £40 per person – are available by table or individually.
“Raising money has got more difficult for charities recently and we really need people to get behind us,”
says Doug. “Hopefully our black tie dinner will become an annual event.
We certainly could do with the money,” he laughs.
■ The charity event is on Saturday, March 21. For tickets ring 0844-335-0512 or 01388- 890775 or email info@heeland toe.org.uk
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