Children with Duchenne muscular dystrophy face a relentless deterioration of their physical mobility. Sadly, nine-year-old Tom can now only walk short distances. But their specially adapted bungalow is finally ready and, as mum Rebecca explains, they have welcomed a new and vitally important member of the family…
Tom loves being outdoors and spending time with assistance
dog Lily, little sister Amy and devoted grandparents Bill and Vera
After three mammoth years in a caravan, we finally moved into our bungalow three weeks ago! It is fantastic to have some space at last. I think I went slightly doolally living in constant chaos but feel decidedly more optimistic about everything. Our bungalow is large and every bit has been designed for Tom so I feel really blessed that we can now and in the future accommodate lots of kids in power chairs.
Tom is on week 53 of an experimental drug trial at Great Ormond Street Hospital. It has been hard for him - bits of muscle chopped out, endless blood tests, lying in the MRI scanner for 90 minutes. It’s likely to take two years or so before they can really tell if the drug works.
Tom has developed the classic Duchenne ‘cushingoid’ face over the past year due to increased steroids and, unfortunately, this last year has seen his biggest decline yet. He is still walking, although now only short distances. We think he probably has six to 12 months of walking left.
Tom now has three wheelchairs, two electric and one manual. The off-road wheelchair means we can do things like go to the beach or a festival. Other kids think it’s really cool, and will come up and talk to him, which really helps because children with Duchenne can become socially isolated.
Knowing what to tell Tom about his condition is a huge challenge. You want to be prepared but questions often come out of the blue, like on the way to the dentist. We have told Tom that he will lose the ability to walk but the other day he said, but what about when I’m grown up? He hadn’t realised it would be for ever. Those conversations are just brutal.
Our focus now is on keeping Tom resilient and exploring all the inclusive things our little boy can do. Tom loves being in the water – the buoyancy means he can hop and jump, which he can’t do otherwise. He’s tried out wheelchair football and he’s also had flying lessons!
Lily, Tom’s assistance dog, has made a huge difference to Tom’s life. I’d say she’s been transformational really. She keeps him company, comforts him and sleeps on his bed. When the other kids run off to play, she stays with Tom. Taking her out for a walk in his off-road wheelchair is his favourite thing.
- World Duchenne Awareness Day is on 7 September 2017
- You can read more about Tom and research we have funded here.