14 March 2008

Cerebral Palsy hits the headlines coping with a disabled child

Yesterday I was moved by a feature on This Morning with Philip and Fern, they carried out a very moving feature of what it has been like for a mother who's daughter had cerebral palsy and the long hard journey and decisions that she made

When Julia Hollander's second daughter, Imogen, was born with cerebral palsy, she believed that it was her destiny to look after her.However, within a few months, the stresses of looking after a baby that was in constant pain, wouldn't feed and never slept proved to be more than she was capable of handling.When Imogen was five months old she was taken to see a neurology consultant. Scans revealed blackness on the brain where her cerebral cortex should have been, this meant that her cognitive powers had been destroyed during the traumatic birth; the prognosis was that she would never walk or talk.

The news hit Julia hard and two days before Imogen was due to come home from the hospital she stopped going to see her. Julia had done vast amounts of research on how to care for Imogen this research unearthed the truth that they could simply not afford to give her the care and attention that she deserved. This lead Julia to take the controversial decision to have Imogen fostered.Imogen was taken to live with Tania, a foster carer who has been looking after profoundly disabled children for ten years. Julia explained: "Tania had a dignity and strength that made me trust her completely. I did not feel humiliated in the way I had expected. I could understand that caring for a severely brain damaged child was something she chose to do.”Julia is very much a part of Imogen's life (she will be six in July) and she visits every couple of weeks. "I want Imogen to gain all that she can from her birth family. But I know that Tania's is her first home. The ties are still loosening. When I talk about Tania, I call her Immie's 'foster mum' rather than 'foster carer'. Sometimes I think of myself not as Immie's mother at all. I could simply be the means by which Tania's child came into the world.

"When the Bough Breaks – A Mothers Story by Julia Hollander

After watching this it got me thinking about how it must of been for my Mum Dad and family when I was diagnosed. Mum said I know what she means that there was no help early on, when you were born I don't think there was a lot known about cerebral palsy 33 years ago, compare to what is known now, so we just muddled on because we didn't know anything else.

The way I see foster parents is more of an extented family and Julia shouldn't feel judged in anyway, because at the end of the day she has done the best she could for her daugter and that is all we need to do in this life is our best. In Julia's story see says "Tania had a dignity and strength that made me trust her completely. I did not feel humiliated in the way I had expected. " but Julia had the strength and dignity to do what she did and as I believe there is a reason for everything in life and life is for living and that is what Julia is doing, giving Tania the best chance.

Cam: This is Ivan

DOTING dad David Cameron was seen for the first time by voters last night playing with his disabled son. The Tory leader was filmed feeding Ivan, five — who has a rare form of cerebral palsy. A TV crew was allowed in as the family had breakfast at home. Mr Cameron’s daughter Nancy, four, and son Arthur, two, sat on either side of him.

He admitted the move would spark accusations he was exploiting his kids for political gain. But he insisted he was a family man with nothing to hide. He said: “You have to do what you are comfortable with. If you are trying to produce policies, people want to know about you — what makes you tick, your life.

“That’s natural. Politicians can sometimes look a bit apart from everyone else.”
Mr Cameron was seen offering his children a choice of Shreddies or Cheerios cereal on ITV News. Wife Samantha helped serve breakfast wearing jeans, red flat pumps and a trendy red top. Viewers got a glimpse of their smart kitchen and lounge in Notting Hill, West London.
Ivan’s condition became known days after he was born — and he needs 24-hour care.

Mr Cameron has told Radio 4’s Desert Island Discs: “We noticed he was having these very strange movements — sudden jerky movements. “Initially we were told he was fine. Then we went to hospital and were told he had a very rare condition, a combination of epilepsy and cerebral palsy.”

PM Gordon Brown has rarely been seen with his own children John, four, and Fraser, 20 months — who suffers from cystic fibrosis. He and wife Sarah have decided never to talk about his condition. But he once opened his heart to Sky News about the death of his premature baby daughter Jennifer Jane.

Mr Cameron let in the cameras as he prepared to unveil new flexible parental leave laws tomorrow. A Tory government would give all new parents a year of time off to share, he will say.
Mums and dads will be able to take six months together or split it between them. The first 14 weeks after birth would automatically go to the mum. Tories vowed the move would not cost employers or the state more than current rules — where parents must take leave one after the other. Mr Cameron said: “I want to make this country more family friendly.

“We’re not going to solve the problems of obesity, drugs, alcohol or educational underperformance unless we help families to do their great work.” Shadow Chancellor George Osborne last night praised his boss over the film. On the BBC’s Question Time he said: “There is massive public interest in the leader of the Opposition.”

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