Two Leeds brothers battling the effects of a life-limiting bone disorder are appealing for help to live independent lives.
Jack Bird, 18, and Lewis, 14, have the genetic bone disorder Morquio syndrome, which means that although their spines stopped growing at the age of three their organs and limbs continued to develop.
Health problems have plagued the Cookridge duo but their parents, Paul and Julie, are hoping to raise around £30,000 for an in-house wheelchair store and accessible kitchen to give them their independence.
Jack struggles to walk, has heart and breathing issues, and Lewis uses a zimmer frame and wheelchair after his hips dislocated and had to be removed.
But the Ralph Thoresby School pupils are determined to fend for themselves and have sought an extension that Leeds City Council will part-fund.
Dad Paul, 47, a handyman for the Royal British Legion, explained the family has been rejected any help from the banks.
“We can’t get any more loans, we are absolutely in limbo and we need something for the boys for their independence,” he said. “It’s hard but you just have to get on with it.”
People with Morquio syndrome, which affects 105 people in the UK, rarely live beyond their 20s as their shortened torsos and compressed organs make the body less able to cope with infection.
But the drug Vimizim, which replaces a missing enzyme, has been seen to help Morquio patients in a clinical trial, which neither Jack or Lewis were able to access. NHS England is expected to decide whether to fund the drug on June 25.
“It’s degenerative, it’s a downhill slope,” Paul said. “We don’t know where we would be with Vimizim.”
Visit crowdfunding.justgiving.com/jackandlewis or email firstname.lastname@example.org to donate.