Bonham was diagnosed with the life-limiting condition at just four-months-old
A mum from Paisley has spoken of the moment she found out her son had a rare condition which left him unable to function independently.
"But my world collapsed and I just broke because I was back in the worst case scenario. I had to fight to get him home and we didn't sleep for months. "That is probably one of things he really enjoys because he can eat during meal times, that is something we all just take for granted."There is also a life-limiting aspect to it. When we first got the diagnosis I researched frantically but it is really rare. We don't know how long we have with him, we've been told it's a regressive disease.
"As a mum I want him to experience as much as possible. Why shouldn't my child go to Blair Drummond or the beach?"
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