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Spreading the word about rare condition
Matthew Valentine of Billinge with parents Roderick and Lynne
NOBODY who meets little Matthew Valentine would have any idea that he has an ultra-rare genetic condition.
But the bubbly three-year-old was diagnosed with the degenerative condition Niemann-Pick Type C when he was just four months old.
They had no way of knowing at the time, but there was a one in four chance that Matthew’s parents, Roderick and Lynne, would have a child with Niemann-Pick.
Now though, they want to raise awareness about the condition and help boost medics’ chances of finding a cure.
Roderick said: “We’ve been told that the symptoms normally start around school age so, at the moment, we’re just monitoring Matthew to see if we can notice any little changes.
“We just hope to carry on as normal for as long as possible and hope that Matthew’s symptoms start later rather than sooner.”
Matthew’s family say they owe an eternal debt of gratitude to the Niemann-Pick Disease Group UK, which has helped them come to terms with his diagnosis every step of the way.
As the charity currently receives no central funding, the family organised a fund-raising barn dance at St Mary’s Catholic Club in Billinge on Saturday (October 6) - raising a stunning £1,800 in the process.
Roderick added: “When Matthew was first diagnosed we tried to do a bit of fund-raising but many people said they’d never even heard of Niemann-Pick.
“That’s why we want to raise awareness about it and help the charity as much as possible. They continue to be an amazing source of support for us all.”
Charity boss Toni Mathison said: “This type of fund-raising forms the backbone of our organisation. We’re incredibly grateful - especially as Matthew’s family are already dealing with difficult times themselves.
“Niemann-Pick is a complicated name and a very complicated disease. We just aim to take away a small amount of stress and anxiety from families like Matthew’s.”
To find out more about the condition, or to donate to the cause, go online at: www.niemannpick.org.uk
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Saturday 25 May 2013
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