Trying hard for treatment
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.