Welcome to our End Duchenne fundraising site.
Thanks for stopping by to see what we are up to!
After a year of watching and waiting for a safe and available window in the pandemic, Nate is now all set for his 100 mile walk to help raise money for Tom and Duchenne UK. He has chosen the Cotswold Way and will be setting off on August 4th and walking for 8 days. We haven’t had a huge opportunity to train for this one, so keep your fingers crossed!
As ever, Nicki is going along as Nate’s packhorse and will be carrying the camping gear and bedding, clothes, first aid, toiletries and a whole stack of food and drink to support our youngest in what will be a decent challenge for his relatively little legs!
For the last six or seven years, with your generous help, we have raised more than £59,000 for Duchenne UK. Please click the links or read on to see why…
Who has inspired this effort?
The cheeky boy in the pictures above, is Tom. He is now 13. He is the son of our amazing friends Becky and Gary. When he was 4 years old, just a few days after his little sister, Amy, was born, Tom’s family was given the life-shattering news that Tom had Duchenne Muscular Dystrophy.
Duchenne is a severe, progressive and currently terminal disease. It is a truly heartbreaking condition, in which previously physically able children experience gradual and permanent wasting of their muscles, eventually rendering them unable to move. It is a genetic disease, which, because of the way it is inherited, primarily affects boys. There is currently no known cure. Those affected require a wheelchair by mid teens and usually die by their mid twenties, as their heart and breathing muscles become affected.
Tom is now unable to walk or sit up from lying down. His family completed a crowdfund campaign to raise the £12,500 they needed to buy him an off-road wheelchair to enable him to enjoy the countryside around his home with his family and his new assistance dog. They lived in a caravan for more than two years as they rebuilt their home to cater for Tom’s current and future needs. They are having to face a desperately uncertain future under the ethos of “hope for the best but plan for the worst”.
However, there is hope!
Clinical trials are underway looking at the potential of several different medications to slow the progression of this very distressing disease, or to stop it in its tracks entirely. But this research can only continue with the input of decent amounts of money. Since it is estimated that a significant breakthrough is only 5 to 10 years away, we are in the wonderful position to be able to make a real difference, right now!
If you would like to donate, click on the JustGiving icon on the right-hand side of this page! (Scroll down if viewing on a mobile).