Simple childhood pleasures like playing out with friends, adventures in the countryside and picnics in the park hold bittersweet memories for 11-year-old Tom Dye.
The devastating muscle wasting disease, Duchenne muscular dystrophy, put him in a wheelchair at the age of eight and continues to rob him of physical abilities, despite his bright young mind still being able to recall how it felt to run, jump, join in and enjoy the freedom of the fields near his home.
His greatest wish is to take his golden retriever Harvey for a “proper walk” and it’s no longer a pipedream. All that stands in his way is the need to raise £12,000. That’s the price of freedom and a revolutionary, all-terrain wheelchair. The Boma, by Molten Rock, is a remarkable feat of invention by someone who knows how it feels to use a conventional NHS chair that struggles to cope with the average pavement. The battery-driven Boma can climb up steps, drive through mud, over tree roots, across sand and snow – and even trek up mountains. It’s most amazing achievement so far is climbing Ben Nevis.
“It’s brilliant. It can go anywhere and it goes much faster than the chair I have now. It also has indicators,” says Tom, of Harrogate, who recently tested the chair at Golden Acre Park, near Leeds.
“The main reason I want one is to take Harvey for a walk in a field.”
Harvey is a dog for the disabled and he provides assistance for Tom. He can take his socks off and picks up items he has dropped. He’s also a wonderful friend.
Tom’s mum Ceri says: “Harvey is fantastic and one of the reasons Tom loves him is that he takes the attention away from him when we are out in the chair. People used to stare but now they come up and ask Tom about Harvey and that’s helped his confidence.”
She adds: “We can take Harvey down the road for a walk with Tom but that’s it. The electric wheelchair he has is limiting. Even going out in the garden is a problem as the wheels can get stuck and the countryside is out of bounds. The Boma is the opposite. It can get anywhere.”
Time is slipping away from Tom, which is why his family have launched a fundraising campaign, via the reputable and secure website JustGiving. Duchenne muscular dystrophy is life-limiting. It would be unfair to say how much but look it up and you will see the urgency. It’s also progressive so Tom’s abilities are being constantly eroded.
DMD occurs in every 3,500-6,000 male births and is caused by a mutation in the gene that makes dystrophin, a protein that repairs muscle tissue. It first affects the pelvis then spreads, eventually targeting the heart and causing complications with everything from digestion to breathing. There is no cure.
“Tom was diagnosed at the age of five because he was always falling. Imagine the devastation when you discover your gorgeous little boy has an incurable life-limiting disease?” says Ceri.
“Tom keeps us going because he is a wonderful boy but every day we watch him deteriorate and it is truly devastating.”
At the moment Tom’s back is an issue and Ceri and husband Bob are busy with a constant round of hospital appointments to ease his pain. Consultants and nurses are a great support but accessing therapy, especially hydro and physiotherapy, is difficult due to NHS staff shortages. The family continues to fight for this and for facilities to help them care for Tom at home and at his mainstream school.
“It sometimes feels like a constant battle,” says Ceri.
After the council refused an extension to their house, they were forced to move and bought a dormer bungalow in Killinghall, Harrogate. They have adapted and extended it to create a self-contained ground-floor suite for Tom, with a bedroom, snug and wet room.
“Then we had to fight for a disabled facilities grant, and getting a hoist and a special NHS bed for him was nearly impossible. It took two years and we managed after our MP Andrew Jones intervened. It is essential because Tom isn’t able to turn over in the night himself,” says Ceri.
The latest issue came when they wanted to take Tom on holiday in term time. His school was reluctant to circumvent new government rules.
“We have to pack in as many holidays as we can and it’s vital we avoid the school holidays as travelling then is too busy and expensive. We always go with Virgin, who are fabulous with Tom, and we take him to America because it’s wheelchair friendly and we have had some very bad experiences in Europe,” says Bob, an electrician.
Finding the strength to do battle with bureaucracy is difficult for Bob and Ceri. They are plagued by sleepless nights and constant worry.
“It never leaves you and little things like seeing children playing or riding a bike really hurt,” she says.
The Boma will lift all their spirits. “We take the view that we have to try and give Tom what he wants now for obvious reasons. The Boma will make a huge difference. He loved being outdoors when he was little and this chair will give him freedom to take Harvey for a walk and to go to the park with his friends. He’s looking forward to going to a bonfire and to the Christmas adventure at Stockeld Park. To sum it up, it will bring a bit of joy into his life, a bit of fun.”
• To help Tom raise the £12,000 for a Boma Molten Rock wheelchair you can donate at, www.justgiving.com/ceri-dye.