Story
Thank you for visiting our JustGiving page.
I know an amazing little man called Harry Barnley.
He suffers from Duchenne Muscular Dystrophy. Harry is supported by an inspirational family who are tackling Harrys situation and raising funds and awareness of this dreadful disease. Harry and his families story is set out below. If you are able to support our challenge the funds will be used to help with vital research into this dreadful disease and hopefully one day find a cure.
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 we were told the results and our world fell apart. We were told it was serious and more tests were needed but it was suspected Harry had Muscular Dystrophy. Two months later following a muscle byopsy it was confirmed Harry has Duchenne Muscular Dystrophy.
So now we 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.
We are enormously grateful for anything you can donate to help support Harry and MDUK in a bid to fight and ultimately defeat this disease.