Parents are on a £10,000 fundraising mission to give their son a fighting chance to prove that he can walk and benefit from a potentially life-changing operation.
Declan Carney-Anderson really is one of a kind; when diagnosed at birth, a worldwide database search revealed he was the only known person with an unbalanced translocation on chromosomes 13 and 14.
It has caused severe learning disabilities and led to long periods in hospital, but the Springhead School pupil, now 11, has already defied expectations to survive beyond his early years.
Parents Sarah and Craig, of Crossgates, who will be fundraising at the Advintageous Vintage Fair at the Spa on Sunday, hope their son can overcome adversity again.
Mrs Carney-Anderson said: “He was supposed to have an operation two years ago to lengthen his hamstrings, but the surgeon who had agreed to do it died before the time.
“Another surgeon said there wasn’t going to be an operation because by the time he was a teenager he wouldn’t have the strength to stand and walk so there would be no point. We think the surgeon is wrong. Declan’s worked really hard on his mobility, he uses a frame and can walk up to 45 minutes at a time, and doctors can’t believe how much he has progressed.”
With local support, the couple have half the money needed for a SP300 Cyclone Mobility machine, originally designed for people with spinal chord injuries, that uses electrical stimulation therapy to build up muscles in the legs.
“If he can prove that he is able to stand and can strengthen his legs, the paediatrician has said he will fight for Declan to get referred again,” said Mrs Carney-Anderson. “But the heavier he gets there’s a probability he will lose his mobility if we don’t do anything about it.”
Organisers of the Spa’s vintage fair, running from 10am-5pm on May 5, are in support.
Visitors can have their picture taken by a seaside-themed cut out and donate money for Declan at the fair, which features vintage stalls, workshops and live entertainment.