Having clocked up hundreds of miles to raise funds to find a cure for the condition, on Saturday 13th June Rich Binns will be cycling a further 100K in a final push for donations to his BackingJack Campaign.
Rich Binns, a dad from Chester, is cycling close to 500km to raise funds to find a cure for Duchenne Muscular Dystrophy (DMD), following the diagnosis of his 4-year old son, Jack.
What is DMD?
Although it’s the biggest genetic killer of children worldwide, few people will have even heard of DMD. It is a cruel, currently incurable muscle-wasting disease that almost always affects boys. The condition progresses slowly, but by the time they’re in their teens, people with DMD have usually lost the ability to walk and require a wheelchair. Eventually, they become paralysed and, because of the condition’s effect on the heart, the average life expectancy is just 26 years old.
What's more, those at Stage IV of the disease, where the lungs and heart are affected, or those being treated with steroids, are at huge risk from Covid-19. The complications, in fact, can be fatal.
Jack’s story
Jack was 3 when his dad, Rich, noticed that he couldn’t do the things most toddlers can, like jumping or walking up the stairs. Jack’s parents and GP initially thought this was due to a hip problem, so they were referred to physiotherapy. Months and months later, with typical family life getting in the way, and not realising how serious his condition was, Jack had a shock diagnosis of DMD within a whirlwind few days.
Day to day, Jack still lives like a typical 4-year-old, and his parents are determined for him to live as normal a life as possible. He has stayed at a conventional school, and is being treated at Alder Hey Children’s Hospital in Liverpool, where the hope is that Jack will be put on a clinical trial for a possible cure.
Richard’s Duchenne Dash
Richard launched the Backing Jack campaign to raise £16,000 for Duchenne UK to help fund research into a potential cure. The plan had been to take part in the Duchenne Dash - a 24-hour bicycle ride from London to Paris - but unfortunately Covid-19 has put the breaks on this.
Instead, many of those taking part in the Duchenne Dash will be doing a 'virtual bicycle ride' indoors. Rich, who lives in isolated countryside, will be cycling over 400km outdoors in May and 100km on the 13th June (the date of the original ride). Jack is not at Stage IV, and is not on steroid treatment, so is at less risk from Covid, though Rich is of course strictly adhering to social distancing guidelines.
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