Harry Barnley is one of two young sons of Tom and Sue Barnley. Tom is a friend and employer, and as a father myself I cannot imagine having to deal with the diagnosis and prognosis of Harry's condition. Tom and Sue are continually raising funds for MD and particularly Duchenne research, as well as funds to adapt their home in preparation for Harry's deterioration.

In June 2013 Harry was diagnosed with one of the most aggressive forms of Muscular Dystrophy, Duchenne. Harry has recently enjoyed his 9th birthday like any other 9 year old. Unfortunately by his 12th birthday 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 will fail, almost certainly before he is 30. The most difficult part - there is no cure, it will happen and it is 100% fatal.

The Muscular Dystrophy Campaign is the leading UK charity focused on muscular dystrophy. They are dedicated to finding treatments and cures and improving the lives of adults and children affected by the condition. As well as providing funding for world class research they also provide practical information, advice and support, campaigning to bring about change and raise awareness.

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