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Vital research in America could transform schoolboy's life
A DISABLED Widnes schoolboy hopes America specialists can transform his life, after the local community raised more than £13,000 for pioneering treatment.
Cameron Bray, aged seven, is the only child in the UK with the rare genetic condition Multicentric Osteolysis, also known as ‘disappearing bone disease’.
The disorder has eaten away at the bones in his hands, feet and and the back of his eyes, and has left him unable to walk.
One of his feet is size eight, whilst the other is size 11, and one of his arms has stopped growing.
Cameron, of Houghton Street, is undergoing research this week at Shriners Hospital for Children in St Louis, Missouri.
His mum, Leanne, aged 29, and step dad, David Dwyer, aged 31, are with him as he has intensive tests.
His consultant at Alder Hey Children’s Hospital has been liaising with Edocrinologist Dr Michael Whyte, medical director at the centre for metabolic bone disease and molecular disease.
He has treated similar cases and wanted to see Cameron in person, after receiving his DNA.
Cameron’s nan, Christine, aged 51, of Grizedale, Upton, is looking after his baby brother, 16-month-old Jacob.
Christine said: “We are hoping and praying that good will come at the end.
“The medical team will meet and summarise their findings and hopefully we will have some answers on Friday.
“If they can help him in his everyday life to be pain free and have the freedom to do normal activities, that would be great.”
Cameron was only diagnosed nine months ago, after having a MRI scan. Until then, doctors thought he had severe arthritis.
Christine said: “It’s been a rollercoaster.
“He didn’t get it until he was 18 months old. It has been baffling consultants all these years. He has had steroid injections and medication used for cancer patients.
“There is nothing more they can do for him here.”
He has been taken off his medication whilst research is carried out in America.
Christine said her family has been overwhelmed by the generosity of people in Widnes who have made it all possible.
She said: “We feel so humble. People have been amazing. Schools, companies and individuals have raised more than £13,000 in five months.”
A bag pack in Asda raised £1,200.
Pupils at Cameron’s school, St Basil’s in Hough Green Road, collected £1 559,after collecting 2p coins, washing cars, holding a non uniform day and staging a swimathon.
Christine said: “It’s phenomenal and meant the world to us. The children have been brilliant.
“Cameron is a fighter.
“He has a wheelchair but he’d rather hop. He is very independent and is always on the go.
“He has never given up hope.”