A Northamptonshire teenager desperately needs a specialist seat to save him from the agony of his spine curving and relieve his painfully stiff muscles.
Tom Dadd, 13, of Old, has Duchenne muscular dystrophy: a life-limiting condition that is slowly robbing him of the ability to use his muscles.
The teenager uses a powered wheelchair that gives him the freedom to get around, but doctors say using it all the time is causing severe curvature of the spine.
Tom's dad Simon said: "We want Tom to be as comfortable as possible and make the most of the time he has left.
"We are desperately worried his next check-up at Great Ormond Street Hospital will reveal his spine has deteriorated even more.
"Being in a cramped position all day means Tom has contractures in his ankles, and stiff and uncomfortable muscles and joints for which there is no relief."
Tom last walked 18 months ago and is losing his upper body strength. His weakening muscles even affect his breathing so he uses a ventilator at night.
Having an adjustable, supportive seat to sit in would make a big difference to his life, but Northamptonshire health and social care have refused to fund it.
Now Newlife - the charity for disabled children - is urgently appealing to the community to help raise £3,430 for the specialist seat.
Simon said: "Having this supportive seat is so important. Not only would Tom avoid his spine getting worse adding to his pain, he would actually be comfortable while we all watch a film together or while he plays online games with his friends.
"It would give Tom a little bit of normality for a while, especially as his deteriorating condition means he has already had to give up so much."
Tom added: "This seat would let me be able to join in with family things like watching TV and to play games with my friends in comfort."
Tom’s six-year-old brother, Ben, also has Duchenne muscular dystrophy. With two disabled children, parents Simon and Ruth find it difficult to find places that will cater for their needs, so most of their memories are made at home.
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “A single piece of disability equipment is simply not enough. No one would expect an able bodied person to go the entire day without changing position - and yet Tom is expected to endure sitting in a single position for the whole day.
“Unfortunately, although we want to help Tom and his family, we simply don’t have the funds to buy the equipment right now. So are desperately appealing to the local community for help to raise the money so Tom can get some much-needed relief.”
Anyone able to help Tom should urgently contact Newlife on 01543 431 444, visit the website at www.newlife.support/HelpTom or email email@example.com.
You can also text NEWLIFE TOM to 70500 to give £10 to Tom’s appeal. Texts cost £10 plus one message at your standard network rate.