A disabled man, who has driven 28 miles in his wheelchair despite being almost paralysed, has said the difficult challenge was worth it for the funds raised.
Jon Hastie, who suffers from the muscle-wasting condition duchenne muscular dystrophy, has raised more than £4,000 for DMD Pathfinders – the charity he co-founded.
“It’s amazing,” said the 35-year-old of Ham Road, considering his initial target was £1,000.
“I’ve received tremendous support.”
He said he found the month-long challenge of driving one mile in his wheelchair every day ‘very hard’.
“Usually around the winter months I tend to stay indoors, just because I get so cold,” he said.
“But I’ve endured the cold, rain, wind, bumpy pavements, fatigue and even a fever. It’s a big deal when you need a ventilator to breathe and struggle to even hold a pen.”
The biggest challenge was getting ready and going out every day, and towards the end he said he was not sure if he could continue.
But he persevered, and his journey has taken him all over Shoreham as well as round the i360 in Brighton, along Bexhill seafront and to Lancing. Jon also filmed his experience live and said: “It got a small following of people who were watching every day, so it was quite social.”
Raising awareness of his condition and encouraging other people living with it to share their experiences is one of his roles as project manager at the charity – and Jon leads by example.
“A lot of young people lack the confidence to speak about themselves,” he said.
Jon was diagnosed with duchenne aged three and began using a wheelchair aged ten, but it has not stopped him from earning a PhD, making a documentary and starting up the charity.
The money he has raised will go towards organising a conference for duchenne sufferers.
Bringing people with ‘complex health conditions’ together is a ‘massive challenge’, he admits.
“The condition can mean a lot of people end up quite isolated and stuck at home,” he said.
“So it can be powerful and inspiring to meet with others.”
The charity is also looking for more trustees to join its board.
Jon urges anyone interested in the condition who is willing to volunteer their legal or financial skills to get in touch.
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