Four cyclists are set to take on a grueling 5 day, 400 mile cycle from Dunfermline to Coventry to raise money for Muscular Dystrophy UK.
Their young friend, Harry Barnley, 6, from Aldershot, Hampshire, was diagnosed with Duchenne muscular dystrophy in 2013 – aged just five years old.
The condition causes muscles to weaken and waste, leading to increasing disability. It not only affects muscles needed for movement, but also heart and vital breathing muscles, cutting lives short.
The team, from Conference Care Ltd, consists of Chris Peacock, Andrew Deakin, Sean Henderson and Pauline Beattie and have already raised £8,500 towards their £10,000 fundraising target.
Pauline said: “I was chatting with Chris, Andrew and Sean about charity fundraising challenges, when Chris came up with the idea to ride between Conference Care’s offices to help a good cause. I said if we did it to help Harry, I knew I would manage the distance.
“Duchenne is a heart-breaking condition and because it is so rare, people don’t know much about it. It feels like a treatment is within touching distance, but it is only by raising awareness and keeping the research going that we are going to get there.”
Harry’s mum, Sue Barnley, said: “Harry is a happy, cheeky boy, who loves football and playing with his brother Jack. Our world fell apart when we found out he had Duchenne Muscular Dystrophy.
“Without any treatment, he is likely to be using a wheelchair by the time he is 10, he will go on to lose the use of his upper body, and eventually his heart will be affected.
“Promising research into treatments is underway. We simply have to make sure the funding is there for this work.”
“It’s amazing that Pauline has gained the tremendous support of the company she work’s for and the Director’s themselves have committed so much time and personal funds into this awesome challenge.
“Pauline has been such a big support over the years, despite living so far away. We just can’t thank her, Chris, Andrew and Sean enough for what they are doing.”
Harry was diagnosed with Duchenne Muscular Dystrophy at the age of five, after his mum and dad noticed he’d developed a strange way of walking on his toes, ‘with his tummy pushed out’.
After many GP appointments, a blood test and a muscle biopsy, Harry’s diagnosis turned Sue’s and Tom’s world upside down.
In 2013 the Barnley’s formed their own Muscular Dystrophy UK Family Fund called Help4Harry. Ever since then, along with their friends and family, they have been busy fundraising and to date have raised over £100,000.
All of the funds raised are being channeled to the Duchenne Research Breakthrough Fund, a special fund created by the charity to accelerate the pace in development of effective treatments for this devastating muscular-wasting condition.
They team start their cycle at 9am on Monday, leaving from the Conference Care Ltd office at Pitreavie Business Park in Dunfermline.