Your world is turned on its head and suddenly even the everyday tasks that we all take for granted become so much harder.
She and husband, Bernard, are full-time carers for their grandson, Kyle.
The 12-year-old has cerebral palsy, epilepsy, asthma, global development delay and learning difficulties.
“Caring for a disabled child you tend not to go out and about as much,” says Mary, 61.
She considers the family lucky as Kyle is mobile, but she says: “People whose children are severely disabled can find it difficult to even go on the bus - simple things that we take for granted.”
That is why the Middlesbrough couple decided to join Parents 4 Change, a network that brings together parents, carers and service users to share their experiences and work alongside the professionals to find solutions to everyday challenges.
“We have learned an awful lot about different disabilities and how people cope,” says Mary. “It makes you feel as though you are not alone and it puts your own child’s disabilities into perspective.”
Showing posts with label learning difficulties. Show all posts
Showing posts with label learning difficulties. Show all posts
16 November 2009
25 April 2009
Incident Under Investigation
It was 1976, a day like all others. I was 25 years old, walking out of a beige and brown stucco building from a meeting that just ended with California Department of Rehabilitation. What was different was that I had had just about all I could handle! I was infuriated, humiliated, and dishonored. As I walked out the door of the office, and took the elevator to the main level, step by step the anger grew inside of me. I felt as though I had just been whipped and tortured.
I walked to my car, opened my car door, and began to cry hysterically. I was hurt, marred, and very wounded. I was just told that I would not be able to carry out my life the way I desired. Somebody else in power was trying to impose their idea of what a “normal” life or a person with a disability should be.
I was told that I could not go to college like other “normal young adults.” I was conveniently labeled mentally retarded for a second time in my life, and my dreams of becoming a dance and recreation therapist were shattered. My dreams of learning the things I never learned in 12 years of grade school felt like they were being stripped away for good. My chance to live a life, like everyone else, and to be looked at with dignity and respect were immediately being crushed, trodden over, and violently subdued.
All I wanted was to be able to live my life like all people. All I wanted was to be accepted in this world, and society, and live a productive life; with purpose and meaning in the areas I knew best. All I wanted was a chance to move forth, to learn, and to better myself, and the conditions I was all too familiar with. I wanted to succeed and make something of myself. I did not want to fritter my life away in front of the television set becoming a vegetable of the state.
I had much, much higher goals and expectations of myself. I had far more dignity and pride than they were willing to toss me. And, what’s more, is that I had far more tenacity and courage then they could ever muster! They did not know who they were dealing with. Know body knew who Karen Lynn Hershkowitz was.
I wanted to do more. I was open, resilient, and receptive to learn. I was willing to do what ever it took. I wanted to properly be able to construct and write a clear, clean, concise, put together sentence without any help from others. Not so far fetched in this 21st century, although for the 20th century, which I was born, and raised; it was an enormous obstacle! They were not going to allow me to learn. They, the (State Department of Rehabilitation) were not going to allow “this” disabled person, with Cerebral Palsy and a learning disability to go to college. It’s very true that we are conveniently discriminated against and still are subtly.
I was not going to put up with this indirect abuse. Nor was I going to sit back on my laurels. Something snapped. Something deep within my soul told me to not give up or give in. I got in my car, drove home and began to plot. I could not sit still on this matter. Thus, the next day, I was writing letter after letter and making phone call after phone call to file a lawsuit to solve this issue at hand. What I did not know is that I would have to fight this battle completely alone. I did not know how long this would take, or how much agony I would have to go through. But I knew that I would be fighting for an entire people.
This act that I was about to take, had never been done before. It had never been undertaken so boldly, and never had such a person such as myself; from the disabled community, chosen to break out of what “the experts believed she could do!” So bold the act was, it never been dreamed of before. No one in the disabled community before me ever had the nerve, guts, courage, spirit, and bravery to challenge the system, and the established stereotypes, and all their beliefs, verbal battering, and contempt’s for our desires, efforts, and needs, were held to be meaningless.
I would not sit in an office, and surrender control of my life and being; to a perfect stranger, who sat higher on the totem pole, without any understanding of the price I had to pay. They had their degree, they had their title, and they were determined not to allow me to have either. They could handle more severe versions of my disability because those people they thought could be controlled. There was no way, heaven on earth that I was going to be controlled, manipulated and forbidden to carry out my plans or destiny in the manor I saw fit. It would take years, but I won. I got the degree, and now, twenty-eight years later, I am proudly working towards a B.A.
I walked to my car, opened my car door, and began to cry hysterically. I was hurt, marred, and very wounded. I was just told that I would not be able to carry out my life the way I desired. Somebody else in power was trying to impose their idea of what a “normal” life or a person with a disability should be.
I was told that I could not go to college like other “normal young adults.” I was conveniently labeled mentally retarded for a second time in my life, and my dreams of becoming a dance and recreation therapist were shattered. My dreams of learning the things I never learned in 12 years of grade school felt like they were being stripped away for good. My chance to live a life, like everyone else, and to be looked at with dignity and respect were immediately being crushed, trodden over, and violently subdued.
All I wanted was to be able to live my life like all people. All I wanted was to be accepted in this world, and society, and live a productive life; with purpose and meaning in the areas I knew best. All I wanted was a chance to move forth, to learn, and to better myself, and the conditions I was all too familiar with. I wanted to succeed and make something of myself. I did not want to fritter my life away in front of the television set becoming a vegetable of the state.
I had much, much higher goals and expectations of myself. I had far more dignity and pride than they were willing to toss me. And, what’s more, is that I had far more tenacity and courage then they could ever muster! They did not know who they were dealing with. Know body knew who Karen Lynn Hershkowitz was.
I wanted to do more. I was open, resilient, and receptive to learn. I was willing to do what ever it took. I wanted to properly be able to construct and write a clear, clean, concise, put together sentence without any help from others. Not so far fetched in this 21st century, although for the 20th century, which I was born, and raised; it was an enormous obstacle! They were not going to allow me to learn. They, the (State Department of Rehabilitation) were not going to allow “this” disabled person, with Cerebral Palsy and a learning disability to go to college. It’s very true that we are conveniently discriminated against and still are subtly.
I was not going to put up with this indirect abuse. Nor was I going to sit back on my laurels. Something snapped. Something deep within my soul told me to not give up or give in. I got in my car, drove home and began to plot. I could not sit still on this matter. Thus, the next day, I was writing letter after letter and making phone call after phone call to file a lawsuit to solve this issue at hand. What I did not know is that I would have to fight this battle completely alone. I did not know how long this would take, or how much agony I would have to go through. But I knew that I would be fighting for an entire people.
This act that I was about to take, had never been done before. It had never been undertaken so boldly, and never had such a person such as myself; from the disabled community, chosen to break out of what “the experts believed she could do!” So bold the act was, it never been dreamed of before. No one in the disabled community before me ever had the nerve, guts, courage, spirit, and bravery to challenge the system, and the established stereotypes, and all their beliefs, verbal battering, and contempt’s for our desires, efforts, and needs, were held to be meaningless.
I would not sit in an office, and surrender control of my life and being; to a perfect stranger, who sat higher on the totem pole, without any understanding of the price I had to pay. They had their degree, they had their title, and they were determined not to allow me to have either. They could handle more severe versions of my disability because those people they thought could be controlled. There was no way, heaven on earth that I was going to be controlled, manipulated and forbidden to carry out my plans or destiny in the manor I saw fit. It would take years, but I won. I got the degree, and now, twenty-eight years later, I am proudly working towards a B.A.
13 April 2009
Why aren't there more places like this?
The death of David Cameron's son has turned the spotlight on a very special group of schools
Caroline Roberts The Guardian,
The topic is "space", and George is making a giant alien flower out of shiny, coloured paper. A teaching assistant helps him to spread the glue with a spatula. Jacob is watching intently and with evident delight as a handful of coloured sequins trickles through his fingers. Other pupils are squeezing lumps of green playdough.
This is not a primary school classroom. The class 3 pupils at St Margaret's school in Tadworth, Surrey, are teenagers with profound and multiple learning difficulties (PMLD) as well as complex medical problems. Like all of the 33 residential and 11 day pupils at the school, which is part of the Children's Trust charity, they are operating at a cognitive level similar to a child of between three and 12 months. Nevertheless, they are achieving. At the end of each lesson, teachers carefully record their progress, such as using their hands, focusing on an object or indicating a preference with a facial expression or gaze.
Full potential
The recent death of Conservative leader David Cameron's profoundly disabled son, Ivan, has thrown a spotlight on the needs and rights of children like these pupils. Cameron spoke movingly of his "wonderfully special" son, and it is clear that other parents of children with PMLD also feel their sons and daughters are special and just as deserving of the opportunity to develop to their full potential as any other child. And this is what St Margaret's aims to do. "It's about giving these children the skills to live life to the max, and be as much in control of their lives as they possibly can," says the head, Jan Cunningham.
The national curriculum does not encompass children operating at such a low cognitive level so, 11 years ago, St Margaret's set about creating its own curriculum. It takes a holistic approach and provides a 24-hour programme that integrates learning and therapy, and is tailored to each individual pupil. There is also a doctor and nursing team. The school was judged outstanding by a recent Ofsted inspection and its curriculum, which was published in 2006, is now being used in over 40 other special schools in the UK and abroad.
The school has soft play areas and hi-tech vibro-acoustic and multi-sensory rooms, which help to develop pupils' ability to interact with the world around them. One room has a screen that produces coloured patterns in response to sounds made by the children, and a dark room helps to develop eye-tracking as they follow coloured lights. "Many of the pupils have limited vision and movement, and we're constantly trying to find ways to address that, and help them to develop their self-awareness and awareness of others," says teacher Ros Howe. The children also enjoy hydrotherapy in the swimming pool, and many off-site activities such as horse-riding.
Due to medical advances that have prolonged life expectancy for some conditions, the number of children with PMLD is increasing. School census figures suggest there are currently around 9,000 in the UK. Not all are as fortunate as those at St Margaret's. For the majority, the only education option is a special school catering for a much wider range of abilities. Staff might only encounter small numbers of pupils with PMLD and so lack expertise in educating them.
The Camerons have spoken about how happy they were with the education Ivan received at his school, Jack Tizard in Hammersmith, west London, where he was taught in a small group of children with similar needs. However, the headteacher at Jack Tizard, Cathy Welsh, is clear about the challenges many special schools face. "In this country, initial teacher training doesn't really address PMLD, so we have to coach teachers ourselves," she says.
"In South Africa and Australia, PMLD training is the norm and we used to be able to take teachers from these countries without any problem. Now they have to requalify here, which takes time and money. Addressing this problem at source by providing initial teacher training pathways in severe learning difficulties and PMLD would really help us."
Mary Greenway had problems finding a school with the right expertise for her profoundly disabled child. Eventually, Harry was allotted a place at St Margaret's, but sadly died after two years at the school. However, Greenway was so impressed with the education he received there that she continues to support the school as chair of governors.
"The local special schools didn't have the experience to meet Harry's needs and it was only when outreach nurses started doing therapy with him that we realised that there could be some achievement, and we fought for a place at St Margaret's," she says. "He used to be in pain and would cry a lot, but the doctors there had the experience to sort out his medication so he was more comfortable and started to be able to access the curriculum. He became much more tactile - it was a tiny step, but it did improve his quality of life immeasurably. We need more places like St Margaret's. It has a positive, 'can do' approach."
At St Margaret's, the fabric of the school is provided by the Children's Trust but, as with other special schools, funding of places is down to the education authority, primary care trust or social services. Sometimes it is a combination of all three, which is complex and can lead to delays. Welsh believes there needs to be a more coherent system. "The high-quality education to which our pupils are entitled is very staff-intensive and requires continuous collaboration between lots of professionals. When children's services and primary care trusts work in partnership and put in the resources, children with PMLD really benefit," she says.
Educating profoundly disabled children is expensive. As well as one-to-one attention, they need equipment such as wheelchairs, standing frames and spinal jackets, which have to be changed as they grow. Cunningham estimates all this costs at least £165,000 a year.
Money well spent
But for parents, it is money well spent. Jake Foreman's daughter, Hattie, has the neurological disorder Rett syndrome, in which St Margaret's has particular expertise. "People with no experience of children with profound disabilities may wonder if it's all worth it," he says. "But, from a parent's point of view, anything that can be done to enhance her happiness and skills is very important.
"We couldn't provide all the things she does, such as the riding. She has a tremendous rapport with animals, responds to swimming and music, and all these things have been taken up by the school. She has really developed in some areas, such as being able to maintain eye contact."
Luckily for Hattie, who is now 15, St Margaret's is developing a service for students to stay on up to the age of 25. This means she can continue to benefit as she moves into adulthood. "The sad thing for most people with PMLD is that, when they get to 19, the funding stops and they get put into residential homes, which rarely embrace education," says Cunningham.
She believes there is an urgent need for more funding to combine education with wrap-around care. "The government needs to get behind residential special schools. You can't put these pupils in a mainstream setting without medical facilities. Residential is often the best way forward for children with PMLD."
Caroline Roberts The Guardian,
The topic is "space", and George is making a giant alien flower out of shiny, coloured paper. A teaching assistant helps him to spread the glue with a spatula. Jacob is watching intently and with evident delight as a handful of coloured sequins trickles through his fingers. Other pupils are squeezing lumps of green playdough.
This is not a primary school classroom. The class 3 pupils at St Margaret's school in Tadworth, Surrey, are teenagers with profound and multiple learning difficulties (PMLD) as well as complex medical problems. Like all of the 33 residential and 11 day pupils at the school, which is part of the Children's Trust charity, they are operating at a cognitive level similar to a child of between three and 12 months. Nevertheless, they are achieving. At the end of each lesson, teachers carefully record their progress, such as using their hands, focusing on an object or indicating a preference with a facial expression or gaze.
Full potential
The recent death of Conservative leader David Cameron's profoundly disabled son, Ivan, has thrown a spotlight on the needs and rights of children like these pupils. Cameron spoke movingly of his "wonderfully special" son, and it is clear that other parents of children with PMLD also feel their sons and daughters are special and just as deserving of the opportunity to develop to their full potential as any other child. And this is what St Margaret's aims to do. "It's about giving these children the skills to live life to the max, and be as much in control of their lives as they possibly can," says the head, Jan Cunningham.
The national curriculum does not encompass children operating at such a low cognitive level so, 11 years ago, St Margaret's set about creating its own curriculum. It takes a holistic approach and provides a 24-hour programme that integrates learning and therapy, and is tailored to each individual pupil. There is also a doctor and nursing team. The school was judged outstanding by a recent Ofsted inspection and its curriculum, which was published in 2006, is now being used in over 40 other special schools in the UK and abroad.
The school has soft play areas and hi-tech vibro-acoustic and multi-sensory rooms, which help to develop pupils' ability to interact with the world around them. One room has a screen that produces coloured patterns in response to sounds made by the children, and a dark room helps to develop eye-tracking as they follow coloured lights. "Many of the pupils have limited vision and movement, and we're constantly trying to find ways to address that, and help them to develop their self-awareness and awareness of others," says teacher Ros Howe. The children also enjoy hydrotherapy in the swimming pool, and many off-site activities such as horse-riding.
Due to medical advances that have prolonged life expectancy for some conditions, the number of children with PMLD is increasing. School census figures suggest there are currently around 9,000 in the UK. Not all are as fortunate as those at St Margaret's. For the majority, the only education option is a special school catering for a much wider range of abilities. Staff might only encounter small numbers of pupils with PMLD and so lack expertise in educating them.
The Camerons have spoken about how happy they were with the education Ivan received at his school, Jack Tizard in Hammersmith, west London, where he was taught in a small group of children with similar needs. However, the headteacher at Jack Tizard, Cathy Welsh, is clear about the challenges many special schools face. "In this country, initial teacher training doesn't really address PMLD, so we have to coach teachers ourselves," she says.
"In South Africa and Australia, PMLD training is the norm and we used to be able to take teachers from these countries without any problem. Now they have to requalify here, which takes time and money. Addressing this problem at source by providing initial teacher training pathways in severe learning difficulties and PMLD would really help us."
Mary Greenway had problems finding a school with the right expertise for her profoundly disabled child. Eventually, Harry was allotted a place at St Margaret's, but sadly died after two years at the school. However, Greenway was so impressed with the education he received there that she continues to support the school as chair of governors.
"The local special schools didn't have the experience to meet Harry's needs and it was only when outreach nurses started doing therapy with him that we realised that there could be some achievement, and we fought for a place at St Margaret's," she says. "He used to be in pain and would cry a lot, but the doctors there had the experience to sort out his medication so he was more comfortable and started to be able to access the curriculum. He became much more tactile - it was a tiny step, but it did improve his quality of life immeasurably. We need more places like St Margaret's. It has a positive, 'can do' approach."
At St Margaret's, the fabric of the school is provided by the Children's Trust but, as with other special schools, funding of places is down to the education authority, primary care trust or social services. Sometimes it is a combination of all three, which is complex and can lead to delays. Welsh believes there needs to be a more coherent system. "The high-quality education to which our pupils are entitled is very staff-intensive and requires continuous collaboration between lots of professionals. When children's services and primary care trusts work in partnership and put in the resources, children with PMLD really benefit," she says.
Educating profoundly disabled children is expensive. As well as one-to-one attention, they need equipment such as wheelchairs, standing frames and spinal jackets, which have to be changed as they grow. Cunningham estimates all this costs at least £165,000 a year.
Money well spent
But for parents, it is money well spent. Jake Foreman's daughter, Hattie, has the neurological disorder Rett syndrome, in which St Margaret's has particular expertise. "People with no experience of children with profound disabilities may wonder if it's all worth it," he says. "But, from a parent's point of view, anything that can be done to enhance her happiness and skills is very important.
"We couldn't provide all the things she does, such as the riding. She has a tremendous rapport with animals, responds to swimming and music, and all these things have been taken up by the school. She has really developed in some areas, such as being able to maintain eye contact."
Luckily for Hattie, who is now 15, St Margaret's is developing a service for students to stay on up to the age of 25. This means she can continue to benefit as she moves into adulthood. "The sad thing for most people with PMLD is that, when they get to 19, the funding stops and they get put into residential homes, which rarely embrace education," says Cunningham.
She believes there is an urgent need for more funding to combine education with wrap-around care. "The government needs to get behind residential special schools. You can't put these pupils in a mainstream setting without medical facilities. Residential is often the best way forward for children with PMLD."
21 March 2009
Years of pain - but Neurofibromatosis sufferer Kirsty Ashton just wants to help our kids
Years of pain - but Neurofibromatosis sufferer Kirsty Ashton just wants to help our kids
By Mandy Appleyard
Kirsty Ashton has had years of surgery to battle an incurable disease. But instead of feeling sorry for herself, she raised £75,000 to make other children’s wishes come true.
Like any 18-year-old, Kirsty Ashton is full of dreams for the future. She’s hoping to go to university soon, then to become an actress, a model or a TV presenter.
But Kirsty has already seen more of life and confronted more of its challenges than most of us ever will.
Kirsty needs crutches to walk far. She has been in hospital countless times, undergoing surgery every year since she was 14.
A lot of the time she’s in severe pain and her body bears the scars from operation after operation to remove tumours from her neck, legs, knees, ankles and feet.
She takes a cocktail of drugs every day, has physiotherapy every week and has some learning difficulties.
But Kirsty shows not a trace of self-pity. In fact she finds time to raise thousands of pounds so that other children with serious illnesses, often terminal, can visit special places like Lapland and Center Parcs.
She says: “I just want to do something for other people. Helping others is what makes me happy.”
Kirsty, who lives with her family in Wythenshawe, Manchester, has every reason to be angry at life, but she isn’t.
She was 11 weeks old when she was diagnosed with neurofibromatosis (NF) – a genetic disorder which can cause multiple tumours to grow on nerve endings on or inside the body.
It affects the nervous system and can even lead to an earlier death.
Her mum Julie, 49, explains: “I have NF but less severely than Kirsty. I knew there was a 50-50 chance of passing it on so when my first child Christopher was born, it was a relief that he was clear.
“But as soon as Kirsty was born I noticed brown patches on her skin, which is a symptom, and a small tumour on her back.”
Despite the diagnosis, life went on as normal until Kirsty was eight, when a check-up revealed curvature in her spine and she was diagnosed with scoliosis. Tumours growing on her spine were pushing it to one side.
It was bad news. But Kirsty and her family didn’t give up.
“In fact my brother Chris knew I’d always wanted to go to Lapland,” Kirsty says. “He said I had been so brave that he wrote to When You Wish Upon A Star – a charity that makes dreams come true for children with life-threatening illnesses – and told them about me.
“I had a great day and I met a girl there that I really liked but she passed away not long after we got back. That’s when I realised that without the charity she would never have got to see Lapland in her short life.”
Julie adds: “The trip really moved Kirsty. She went with her dad John and saw children with cancer and terrible conditions.”
Kirsty decided to start helping local charities, selling bric-a-brac and giving the money to charity.
Meanwhile she still had to deal with her own disease.
When she was nine she started wearing a Boston Brace 23 hours a day to help support her back and ease the pain.
A hard “jacket” reaching from the top of the chest to the bottom of the hips, it was hot and uncomfortable. But Kirsty amazed doctors with how quickly she got used to it, and she wore it permanently for the next six years.
“Kirsty had to have major surgery at 14, where the surgeon put titanium rods into her spine to straighten it,” Julie says.
“Removing the tumours was too risky because of the danger of paralysis so the rods were seen as the next best thing. But even the surgery could have paralysed her.”
She spent two weeks flat on her back and three months in hospital – yet still she stuck to her mission to make life easier for other sick children.
In the past three years she has raised an incredible £73,740 for When You Wish Upon A Star. Kirsty explains: “I organised a charity ball which raised £24,801 and a Valentine’s ball which raised £23,000. I did a sponsored spell – because I’m dyslexic and thought it would be a challenge – in my lunch hour and raised £170.”
She’s also sold home-made Christmas cards, organised a rugby tournament and sold more than 800 pin badges.
A total of 94 children have been able to travel to Lapland in the last three years as a result of Kirsty’s fund-raising.
But Kirsty, who has written a book about her struggle with NF and is now looking for a publisher, has no intention of stopping there.
“I want to raise a further £75,000 in the next year to send 30 to 40 families to Center Parcs with children who are too poorly to fly.”
Maria Moseley, the charity’s events manager, says: “Kirsty is an amazing young lady. She is our own fairy godmother – and she’s a fantastic role model to other young people. She helps make magical memories for some courageous children.”
And Kirsty’s own battle goes on. She has endured serious surgery every year for the last four years.
Each time she’s had five tumours removed and has been left with three particularly severe scars on her back.
Her mum says: “Neurofibromatosis can be very cruel and we don’t know whether her life expectancy will be impaired.
“But Kirsty’s a very bright and happy child in spite of all the
challenges she faces.
“She never complains and is always thinking of other poorly children.
“She’s one in a million – I love her more than words can say.”
Kirsty’s wish... to be a model
We treated Kirsty to a day living her dream – to be a model.
Courtesy of the Mirror, the young campaigner was whisked to our photographic studios in London, where a top stylist was waiting to meet her.
She was given a luxury makeover before strutting her stuff in front of the camera – producing a portfolio of shots.
She says: “I loved every minute of the day, it was brilliant from start to finish.
“Having my make-up done, and trying on all of the clothes made me feel like a real model.
“The photos are great and I’m just so pleased I had a chance to do it.”
In recognition of her hard work and dedication, Kirsty was named
a “UK Huggable Hero” in 2008 by Build-A-Bear Workshop. Kirsty has
her own website at www.kirstysstory.co.uk and When You Wish
Upon a Star can be reached at www.whenyouwishuponastar.org.uk
or by calling 0161 477 7277.
By Mandy Appleyard
Kirsty Ashton has had years of surgery to battle an incurable disease. But instead of feeling sorry for herself, she raised £75,000 to make other children’s wishes come true.
Like any 18-year-old, Kirsty Ashton is full of dreams for the future. She’s hoping to go to university soon, then to become an actress, a model or a TV presenter.
But Kirsty has already seen more of life and confronted more of its challenges than most of us ever will.
Kirsty needs crutches to walk far. She has been in hospital countless times, undergoing surgery every year since she was 14.
A lot of the time she’s in severe pain and her body bears the scars from operation after operation to remove tumours from her neck, legs, knees, ankles and feet.
She takes a cocktail of drugs every day, has physiotherapy every week and has some learning difficulties.
But Kirsty shows not a trace of self-pity. In fact she finds time to raise thousands of pounds so that other children with serious illnesses, often terminal, can visit special places like Lapland and Center Parcs.
She says: “I just want to do something for other people. Helping others is what makes me happy.”
Kirsty, who lives with her family in Wythenshawe, Manchester, has every reason to be angry at life, but she isn’t.
She was 11 weeks old when she was diagnosed with neurofibromatosis (NF) – a genetic disorder which can cause multiple tumours to grow on nerve endings on or inside the body.
It affects the nervous system and can even lead to an earlier death.
Her mum Julie, 49, explains: “I have NF but less severely than Kirsty. I knew there was a 50-50 chance of passing it on so when my first child Christopher was born, it was a relief that he was clear.
“But as soon as Kirsty was born I noticed brown patches on her skin, which is a symptom, and a small tumour on her back.”
Despite the diagnosis, life went on as normal until Kirsty was eight, when a check-up revealed curvature in her spine and she was diagnosed with scoliosis. Tumours growing on her spine were pushing it to one side.
It was bad news. But Kirsty and her family didn’t give up.
“In fact my brother Chris knew I’d always wanted to go to Lapland,” Kirsty says. “He said I had been so brave that he wrote to When You Wish Upon A Star – a charity that makes dreams come true for children with life-threatening illnesses – and told them about me.
“I had a great day and I met a girl there that I really liked but she passed away not long after we got back. That’s when I realised that without the charity she would never have got to see Lapland in her short life.”
Julie adds: “The trip really moved Kirsty. She went with her dad John and saw children with cancer and terrible conditions.”
Kirsty decided to start helping local charities, selling bric-a-brac and giving the money to charity.
Meanwhile she still had to deal with her own disease.
When she was nine she started wearing a Boston Brace 23 hours a day to help support her back and ease the pain.
A hard “jacket” reaching from the top of the chest to the bottom of the hips, it was hot and uncomfortable. But Kirsty amazed doctors with how quickly she got used to it, and she wore it permanently for the next six years.
“Kirsty had to have major surgery at 14, where the surgeon put titanium rods into her spine to straighten it,” Julie says.
“Removing the tumours was too risky because of the danger of paralysis so the rods were seen as the next best thing. But even the surgery could have paralysed her.”
She spent two weeks flat on her back and three months in hospital – yet still she stuck to her mission to make life easier for other sick children.
In the past three years she has raised an incredible £73,740 for When You Wish Upon A Star. Kirsty explains: “I organised a charity ball which raised £24,801 and a Valentine’s ball which raised £23,000. I did a sponsored spell – because I’m dyslexic and thought it would be a challenge – in my lunch hour and raised £170.”
She’s also sold home-made Christmas cards, organised a rugby tournament and sold more than 800 pin badges.
A total of 94 children have been able to travel to Lapland in the last three years as a result of Kirsty’s fund-raising.
But Kirsty, who has written a book about her struggle with NF and is now looking for a publisher, has no intention of stopping there.
“I want to raise a further £75,000 in the next year to send 30 to 40 families to Center Parcs with children who are too poorly to fly.”
Maria Moseley, the charity’s events manager, says: “Kirsty is an amazing young lady. She is our own fairy godmother – and she’s a fantastic role model to other young people. She helps make magical memories for some courageous children.”
And Kirsty’s own battle goes on. She has endured serious surgery every year for the last four years.
Each time she’s had five tumours removed and has been left with three particularly severe scars on her back.
Her mum says: “Neurofibromatosis can be very cruel and we don’t know whether her life expectancy will be impaired.
“But Kirsty’s a very bright and happy child in spite of all the
challenges she faces.
“She never complains and is always thinking of other poorly children.
“She’s one in a million – I love her more than words can say.”
Kirsty’s wish... to be a model
We treated Kirsty to a day living her dream – to be a model.
Courtesy of the Mirror, the young campaigner was whisked to our photographic studios in London, where a top stylist was waiting to meet her.
She was given a luxury makeover before strutting her stuff in front of the camera – producing a portfolio of shots.
She says: “I loved every minute of the day, it was brilliant from start to finish.
“Having my make-up done, and trying on all of the clothes made me feel like a real model.
“The photos are great and I’m just so pleased I had a chance to do it.”
In recognition of her hard work and dedication, Kirsty was named
a “UK Huggable Hero” in 2008 by Build-A-Bear Workshop. Kirsty has
her own website at www.kirstysstory.co.uk and When You Wish
Upon a Star can be reached at www.whenyouwishuponastar.org.uk
or by calling 0161 477 7277.
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