VIDEO: Near-paralysed Shoreham man in fundraising drive
A disabled man from Shoreham has been driving 28 miles in his wheelchair throughout February, despite being almost paralysed, to raise funds for the charity he co-founded.
Jon Hastie, 35, suffers from Duchenne muscular dystrophy, a progressive muscle-wasting condition which has left him relying on a portable ventilator to breathe and requiring round-the-clock care.
His ‘cold hand challenge’ sees him drive his wheelchair one mile every day in February – just by moving his finger. In the cold weather, this becomes ‘a nearly impossible task’.
But Jon said: “I’m determined to complete the challenge and raise money for our cause.
“I’ve been blown away by the generosity we’ve seen so far and how much support everyone has shown us. It makes it all worth the effort it takes to brave the elements!”
He beat his first fundraising target, £1,000, before the challenge had even started and hit his second target of £2,000 two days in.
All the money will go to DMD Pathfinders, the charity he set up with Mark Chapman, 46, who also lives with the condition, to support adults living with Duchenne to have a better quality of life.
Jon has worked with young sufferers to help them prepare for adulthood and said: “What is striking is how low expectations at school can affect young people with DMD, who were often written off, as they were not expected to live beyond 20.”
Average life expectancy is from mid to late-twenties, but recent advances have seen adults living into their 30s, 40s and beyond, becoming an ‘unexpected generation,’ according to Jon.
He said: “The care hasn’t kept up and people often have no information or support to live their lives. We know that when the right support is in place, adults with DMD can have great quality of life.
“Some of our members have degrees and PhDs, are published authors, artists and music promoters.”
Jon has a PhD in Government and travelled around the country to make a documentary about people living with Duchenne, called A Life Worth Living, which was played in Parliament.
He is also filming his challenge to help raise awareness of the condition.
To donate, visit Jon’s fundraising page here
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