9:49am Thursday 9th July 2009
By Joanna Lean
WHEN Mark Holder and Sarah Bain were told that their 10-month-old son, Scott, was likely to never leave hospital, they could have given up.
Instead, the couple have turned their attention to creating something positive from the devastating news that their boy had an incurable disease.
Mark and Sarah, of Doeford Close in Culcheth, want to set up a charity in Scott’s name to help other families cope with mitochondrial cytopathy.
After doctors could finally put a name to what was causing Scott’s illness, the couple set about trying to find out about it.
They were surprised to learn there is no dedicated charity for the disorder, and they want to create a focal point where doctors, parents and sufferers can go to find out more information.
“Even staff at Alder Hey are having to research it now to help us. Sometimes cases are pointed to other things like epilepsy or cerebral palsy so people end up getting treated for conditions they don’t have,” said Mark, aged 28.
“If people knew more about it then maybe Scott would have been diagnosed earlier and we wouldn’t have wasted all that time having tests.
“We could have taken him home and done all these things we wanted to do. It’s too late now to have any quality of life for him at all.
“Most of his life has been spent in hospital, but we can’t go back in a time machine. No matter how much money or awareness we raise we won’t be able to help Scott but we might be able to help other families.”
A dedicated charity could help and support other families, but they also want to educate doctors so they can spot the signs earlier.
“Maybe if there’s a leaflet in a hospital and a doctor flicks through it, it might just help another family to get a diagnosis and start spending their time more wisely.”
If you can offer help or advice to Mark and Sarah, email thescottfoundation@hotmail.co.uk.
There is also a Facebook group which can be found here.
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