Story
Thanks for taking the time to visit my JustGiving page.
For the first time I am taking part in the Cardiff Half Marathon. The inspiration behind this is a little chap in my daughters school called Harry Barnley. He suffers from Duchenne Muscular Dystrophy. His and his families story is set out below.
If you feel able to sponsor me the funds will be used to help fund vital research into this dreadful disease and hopefully one day find a cure.
Harry, like many boys his age enjoys running round with his friends playing football, swimming and generally being a bit cheeky.
It was often pointed out that Harry's calves and legs were bigger than most children his age so family and friends would joke that Harry will soon find his way to the rugby pitch. Unfortunately Harry couldn't quite keep up with his friends when running so after various GP appointments Harry had a blood test.
On the 1st June 2013 the Barnley family were told the results and their world fell apart. They were told it was serious and more tests were needed but it was suspected Harry has Muscular Dystrophy. Two months later following a muscle biopsy it was confirmed Harry has Duchenne Muscular Dystrophy.
Now they know by his 10th birthday it is likely he will be in a wheel chair and his upper body will then begin to shut down due to this rare and painful condition leaving him locked inside his own body. As a muscular degenerative disease eventually his heart and lungs will fail, almost certainly before he is 30. The most difficult part - there is no cure, it will happen and it is 100% fatal.
There is a large amount of research currently taking place in the UK and abroad but as yet the only treatment is a steroid program to help manage the disease.
Help4Harry are a family fund supporting Muscular Dystrophy UK and specifically the Duchenne Research Breakthrough Fund which is working to advance research and emerging treatments for duchenne. All money I raise will be dedicated to Help4Harry and the Duchenne Research Breakthrough Fund in the hope that Harry and other children across the UK will benefit from their work.