Trying hard for treatment
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