The family of a boy with a rare life-limiting disease are trying to raise £15,000 for a DIY SOS-style makeover of their home following a shortfall in council funding.
Six-year-old Will Bell has Duchenne Muscular Dystrophy – an incurable muscle-wasting condition which will considerably shorten his life expectancy.
The disease has left the schoolboy wheelchair-bound, severely fatigued and with autism. He is only expected to live into his late 20s.
Parents Sam Bell, 42, and husband Adam, 45, moved into a bungalow two years ago in a bid to improve Will’s quality of life and help with mobility issues.
The family were assured £30,000 of council funding would be available for an extension to provide Will with his own bedroom and wet room.
But the couple, of Boston, Lincs., have now been told the building work will cost around £45,000 – which they cannot afford.
In a double blow, they cannot receive any additional funding from Boston Borough Council because they are both in full-time work.
Will currently shares a bedroom with his nine-year-old sister Neave but his condition means he can lash out and he often hits his sibling.
As a result, the youngster needs his own space but Sam and Adam have been unable to provide their son with the help he needs.
They are now desperately trying to raise £15,000 to give Will “the best Christmas present ever” after being let down by their local authority.
The couple are also appealing directly to any tradesman, builders or architects who might be able to lend a hand.
Mum Sam, a registered care manager, said: “About three years ago Will was diagnosed with Duchenne Muscular Dystrophy.
“It is a genetic condition that causes weakness in all the muscles.
“The illness starts with the legs and later on progresses to the upper body, then arms and lastly it is the heart and breathing. Everything is wasted and deteriorates.
“Will is in the early stages but his mobility has declined and recently he has started to fall off his feet and now uses a wheelchair at times.
“His life expectancy is late twenties because it won’t stop weakening the body and muscles and there’s no cure for it.
“We were living in a two-up two-down and he was struggling with the stairs. We were told we would be better getting a bungalow that we could adapt.
“We scrimped everything together that we could and managed to move to a bungalow but we could only afford a two-bed property so he has to share with his sister.
“It is difficult for both of them because of the way his mobility is declining he has a special profile bed which is huge and takes up a lot of room.
“He wears splints at night and we turn him in the night. It is quite intrusive. Neave has to watch it all because we haven’t got the room.
“His sleep is disrupted. Because he has got splints on we have got to pick him up to take him to the loo.
“It is unsettled all night which then affects Neave at school because she is tired. She needs the respite and a bit of time out.
“We have quite a few behavioural issues with Will because he gets frustrated. When he becomes challenging he shouts, screams and hits out.
“We have spent years battling for a disabled facilities grant and I’ve been told we can have the basic £30,000 but the building work comes to at least £45,000.
“We have got to find the £15,000 shortfall, which is a lot of money to find.
“We both work but we don’t have that money spare. I don’t think a lot of people have that money. So we’ve got the Go Fund Me page set up.
“It would make such a difference to all of us. For our mental health and wellbeing and for Will to have his own space so we could look after him properly.
“And for him to have his own dignity and privacy. He just needs that space and we need it ready as he gets older because he will need more equipment.
“I think so far we have £2,500 which is great but a long way off what we need. It just takes one person to hear or read something that can make the difference.
“It would be the best Christmas present ever but realistically this could take a while. We are just hoping for the best.”
Will was on experimental alternative steroids for 18 months in London, but the PolarisDMD medication trial ended unsuccessfully a few months ago.
Sam said: “The medication wasn’t found to be providing any benefit to patients so it was pulled and discontinued so that was another blow.
“We just want to give him the best quality of life possible.
“He is cheeky like a normal six-year-old and mischievous. He loves his Lego and Minecraft.
“Will doesn’t understand what his condition is. We like it that way at the minute. I don’t think he needs to.
“I think the main problem is the system, how frustrating that three years on from the diagnosis there seems to be hurdle after hurdle.
“I think the disability facilities grant has been £30,000 for the past 10 years. That amount doesn’t reflect what facilities cost now. I think it is totally outdated.
“The £30,000 is not means-tested, but there were discretionary funds that the council can pay. But because we both work we weren’t eligible for that.
“I think is unfair when you have both paid into the system and worked with people with learning disabilities for 30 years.
“The £30,000 is set by the government and the discretionary funds are a local decision.
“I don’t believe it has been reviewed for many years. A lot of people would just accept that but I’m not going to.
“Will should be able to have what he needs to live as normal a life as he possibly can.”
Sam’s mum Bridget Rowe, 62, said her grandson’s situation was “absolutely heartbreaking”.
The gran-of-four, a care home operations manager, added: “They are such a beautiful family. He is such a beautiful little boy.
“He so desperately needs this work. This is time they should be making memories. Instead they are battling all the time.
“As a parent your natural instinct is to make things right and I can’t make it right. Sam can’t make it right for William.
“You can’t take away the pain and the heartbreak you see your own daughter suffering every day.
“When you talk to anyone with a child, you can’t imagine. I don’t think people can imagine it unless they have been faced with it.
“Any childhood illness is awful but there can be a hope. At the minute there is no hope because there is no cure out there.
“He needs his own space. Neave is nine. She is aware up to a limit but she needs her own space.
“They just seem to get knocked back all the time. It seems so horrendous.
“I would really like to see them have some happy times while they can without all this constant worry.
“All you can do is hope some miracle will occur. Please, if there is anyone who can help in any way, get in touch.”
One in 3,500 boys are born with the rare muscular wasting disease. There are 2,500 patients in the UK and an estimated 300,000 worldwide.
To donate, visit: https://gf.me/u/y93vpu