Lisa, mum to Alfie, shares how receiving an all-terrain wheelchair for Alfie through our Joseph Patrick Trust (JPT) grant has been life changing for the whole family. She talks about how Duchenne muscular dystrophy started to strip away Alfie’s independence, what the JPT grant application process was like, and the simple, but essential, pleasures Alfie can now enjoy again.
“His new all-terrain wheelchair has given our son his smile back.”
Alfie’s a gamer at heart, with a soft spot for Mario adventures and a love of swimming. But he thrives in the great outdoors and loves nothing more than walking our two dogs in the woods. Unfortunately, Alfie has found it increasingly difficult to enjoy these simple pleasures over the last few years due to his condition deteriorating.
This would be hard for any child to understand, but Alfie has Autism, ADHD, and learning difficulties on top of Duchenne. This combination makes daily life even more complicated, as his body can’t keep up with his extremely active brain.
Alfie wants to be constantly on the move, exploring and engaging with the world, but his condition often holds him back.
Watching Alfie lose the ability to enjoy nature
It started becoming harder and harder to find activities Alfie enjoyed, as he would get frustrated when he couldn’t get around independently. He’s very strong willed and hates being pushed about in a wheelchair!
Alfie has needed to use a wheelchair for long distances from a very young age, but has always loved exploring our local woods. He’d get out of his wheelchair for short periods and explore off the paths, then come back to sit down and carry on. Over the past year or two he’s needed the chair more; just at the time when he’s getting to an age where he wants more freedom and independence. Walks in the woods became too frustrating for him, so we had to stop going for walks together.
Discovering the Joseph Patrick Grant
We knew Alfie needed a more robust wheelchair that could handle outdoor terrain and give him back his freedom. But we were concerned about finding funding for what others might consider a ‘luxury’ wheelchair. To us, though, it wasn’t a luxury.
It was essential to Alfie’s mental wellbeing, and our family’s way of life, that he could enjoy being amongst nature.
I heard about Muscular Dystrophy UK through a Facebook support group for parents of children with Duchenne. When I saw they offer grants for specialist equipment, I was so excited. The application process couldn’t have been easier. We applied in September and by January, Alfie had his all-terrain wheelchair.
We were so relieved when we found out he’d be getting this wheelchair. He instantly loved the freedom it gave him. On his first trip out in the chair, he said “this is amazing!” while speeding through the woods.
Everyday he’s getting more adventurous with his wheelchair and learning what it can do. He’s gone from only being able to go on dry, flat paths, to racing through grass, uneven ground, sand… you name it. And what young boy doesn’t love ‘running’ through mud.
Alfie has the independence to not just come along on walks — he can lead the way. He can go ahead, take his own route, and explore without needing someone to push him. We have had to limit the speed of the wheelchair just so we can keep up!
This is life changing for our whole family, not just Alfie. It’s been such a long time since we’ve been able to go for a walk in the woods together or take a trip to the beach. Such simple pleasures, that other families may not even think about, are so important.
Why these grants matter
Grants like this aren’t about extras. They’re about access and inclusion. For someone with a muscle weakening condition, a walk in the woods or a roll along the beach can feel like a distant memory. This grant allows families to return to making precious memories together.
Specialist equipment comes at a huge cost, often beyond the reach of ordinary families already working around the added expenses of a disability. Support from organisations like Muscular Dystrophy UK makes life more enjoyable, and for that we’d like to say thank you. The joy on Alfie’s face every time he gets out in nature now makes every part of this journey worth it.
