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.