A Northampton teen desperately needs a specialist seat to save him from the agony of his spine curving and relieve his painfully stiff muscles.
Tom Dadd, aged 13, from Old, has Duchenne muscular dystrophy; a life-limiting condition that is slowly robbing him of the ability to use his muscles.
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.
Tom’s powered wheelchair gives him freedom to get around, but doctors say using it all the time is causing severe curvature of the spine.
Having an adjustable, supportive seat to sit in would make a huge 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 local community to help raise £3,430 for the specialist seat.
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’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.
Simon adds: “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.”
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.”
STOP PRESS: Thanks to a great community effort and lots of media support we have now raised enough money for Tom’s specialist chair. However, you can still donate to help the other 34 children on our waiting list in the East Midlands who need £61,993 of specialist equipment. If you are able to help please call 01543 431 444 or email email@example.com.