Trying hard for treatment
HEALTH EXPERIENCE:While Cherie will always suffer from cerebral palsy, a US operation offers hope for a better quality of life
I was on a visit back to Finland to see my mother when Cherie was born. She was 12 weeks premature and pretty much straight away they told me to expect some sort of difficulties further down the line.
It was a year, though, before the nature of the problem became apparent really. An MRI scan had shown brain damage and the doctors felt that her motor function wasn’t at the level that would have been expected and eventually cerebral palsy spastic diplegia was diagnosed.
Intellectually she is absolutely fine. In effect, it means that she suffers from tight muscles in both of her legs. They told me at the time that they weren’t sure whether Cherie would ever walk; that every case is different.
It’s been a struggle for her during the years since but Cherie can walk, at least a little. Physiotherapy has helped and she has already had the sort of treatment that kids with the condition commonly undergo in Ireland.
She had an operation to lengthen her heel cords and also Botox injections (intended to ease the tightness in the muscles), although the latter didn’t really work for her after the first time and so they were discontinued.
She’s six now and if she followed the normal course of treatment here she would be in for a string of further operations over the coming years; regular surgical interventions in order to address the likes of hamstring problems, or the hip operation they say she is going to need because her feet are turning inwards and undermining her already precarious balance.
At present she can walk a little on even ground but generally uses a frame. Still, it requires a huge amount of effort and because of the exertion involved, she spends much of her time in a wheelchair.
Hope in the United States
In the normal course of events that’s where she might expect to end up permanently; the muscle problems tend to affect bone development as children with the condition grow and generally speaking, things only get worse as they get older.
A couple of years ago, however, a friend of a friend mentioned hearing something about a doctor in America who was operating on kids like Cherie with great results. I spent months researching on the internet, talking to parents of children who had already been patients of Dr TS Park at St Louis Children’s Hospital in Missouri and, eventually, communicating directly with his staff there.
For more than 15 years he has been carrying out a procedure called Selective Dorsal Rhizotomy (SDR); he has carried out more than 2,000. It involves operation on the nerve endings where they enter the spinal cord and the results can be hugely positive.
After reviewing Cherie’s records they said she’d be a suitable candidate for the procedure and that if things go well she should be able to walk far more independently afterwards.
It would also mean that she shouldn’t need most of the other operations she can expect to have now. He says that he will assess her before she goes into the operating theatre and do whatever she requires at the same time as the main operation.
The catch is that the cost is high and it’s not funded at all here; nobody really seems to know why.
Like the parents of the other kids who have made the trip, I have to raise €60,000, two-thirds of it for the actual trip and hospital costs and the rest for aftercare – there’ll be a lot of physiotherapy required as Cherie will essentially have to learn to walk from scratch again. While Enable Ireland have been as supportive as they can be at present, things have been cut back badly, Cherie has lost a lot of the help she was getting and we have been warned not to expect too much after the operation.
We started the fundraising back in January of last year and it well. By the summer, with the help of many friends, everyone at Booterstown National School where Cherie goes, Newpark, where her older sisters Claudia and Christel are and also Charity Begins At Home, who have been very supportive, we were up to nearly €40,000.
We’re over that mark now but things have stalled a little since then. I thought it was only fair to give people a break through the summer months and then the girls’ dad, Kiyambou, died suddenly and it took a while for everyone to come to terms with that.
In the meantime, slots in the hospital’s roster have slipped by. Cherie currently has the offer of a place in February and if she misses that then there is likely to be one in the summer. After that, it’s not entirely clear when she might get another opportunity.
The delays are hard on her but, as ever, Cherie is remarkably good about it all. She’s a really happy kid. We’ve never treated her any differently and while she knows she is different she doesn’t look to make anything of it.
During her two years in preschool and now in the early stages of primary school in Booterstown, she’s always trying to do whatever it is the other kids are doing. Even in PE she looks to get involved but the limitations are always there.
The operation offers the possibility that she will be able to do more of the things that her school friends do without help from a teacher or the support of a walking frame. That is very exciting for her, she cherishes her independence.
She knows that the trip and the operation will be tough. She’s so small that she doesn’t really remember a lot of what she’s been through but she does remember not liking the experience of having her heel cords lengthened and all that went with it. She’s not a big fan of hospitals but she is a big fan of walking independently.
When we talk about what the operation might mean for her, she asks if it means she can have her own skipping rope.
News that they had started performing the operation she needs in Bristol, at Frenchay hospital, seemed to offer some hope that we might avoid having to go to America .
It seems to take forever even to get to see a consultant to talk about it. A few Irish kids have travelled there instead of St Louis but it doesn’t seem any easier really and so as things stand the aim is still to raise the balance of the money to get to the States.
Those who have been through the process are hugely supportive; we talk to each other a lot and they provide a lot of advice and the parents of Michael Tiron, a boy from Greystones who has already had the operation, have offered €2,000, which will hopefully kick-start the fundraising again.
Hopefully it all finally happens in 2013. It’s not a cure, of course . . . there is no cure. She will still have the cerebral palsy; that will never go away, but she will have a better quality of life. The condition will be more manageable.
In conversation with EMMET MALONE