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Jon’s story of finding disability support for his son

Find out how we supported Jon when his son Ben needed disability equipment to keep active and spend time with his friends.

I’m Jon, an engineer in the Royal Navy. My ten-year-old son Ben has hemiplegic cerebral palsy which affects the right-hand side of his body. He has to use a piece of equipment called a Functional Electrical Simulator (FES). Without it, he can’t walk more than a few hundred metres without exhaustion and pain. Ben wears the FES on his leg. The inertial sensors then electrically stimulate his leg muscles in time with his step and keep them moving. Before he had this, he often had to use a wheelchair to get to school.

Living with a disability

Four years ago, Ben got his first FES device and it transformed his life. He could enjoy PE at school, play with his mates and take part in archery. We even managed to get him up a Scottish mountain!  Before the FES, he struggled to get down the road. As time went on, the FES began to break regularly.

Ben had to miss out on activities, and it began to affect his day to day life.

Unfortunately, this disability device is not available on the NHS in our area. This meant we’d need to fund it ourselves to keep Ben mobile. I thought the replacement would cost about £1,500. But when I looked into it, I found the original supplier had stopped trading. The only suitable alternative cost £6,000 for the device, set up and first year’s support. I was shocked and worried about how we would be able to afford this at short notice. I couldn’t allow Ben to return to pain and be reliant on a wheelchair, so we began to look at other options.

Getting funding

I was aware of Foothold as I receive regular email updates through the IET.  So I got in touch in August and asked if they would be able to fund some of the difference in cost so we could get Ben a new FES. I was so happy and relieved when they said yes and the funds came through quickly, minimising the amount of time Ben had to spend without FES support.

It was a huge weight off my mind and he’s now back to living his life to the full.

Things could have been very different for Ben if Foothold hadn’t helped us and we are very grateful for their support.

If you’re living with a long-term condition or a disability and there’s something you need to make your life easier, we could help. Get in touch with us now. 

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