Ben's Marathon for Help Harry / Duchenne UK
Ben Hitchmough is raising money for Duchenne UK
Story
Help Harry supports Duchenne UK a charity that has one clear aim to end Duchenne muscular dystrophy (DMD).
DMD is a devastating muscle-wasting disease. It is the most common and severe form of muscular dystrophy. Diagnosed in childhood, it mainly affects boys. Started by families affected by the disease, Duchenne UK is the leading DMD charity in the UK: connecting the best researchers with industry, the NHS and families to advance and accelerate every stage of drug development.
Harry’s Story: (from his mum, Rachel)
Harry was two and half when we found out he had a condition called Duchenne Muscular Dystrophy.
Myself and my husband had never heard of this dreadful condition and sat in disbelief as we were told to go away and enjoy your son, there is not a cure. After months of tears and feeling like all our hopes and dreams had been taken away for the future we decided enough was enough we needed to do something.
So we decided to start fundraising and it was the best decision we made. We have taken part in the Duchenne Dash and I have run the London Marathon. We have held lots of events raising money to fund vital research into the condition. When we met Alex Johnson and Emily Reuben founders of Duchenne UK and saw how determined and dedicated they were to finding a treatment this gave us the hope and strength to keep going. We are not going to give up on our son and we decided to join them in the fight to save our sons.
Harry has turned 13. He enjoys swimming, horse riding, art and crafts and building with his lego and is a very happy boy. He enjoys school and playing with his younger sister Grace.
We do live for the moment. We try to spend as much time with our children as we can as we all don't know what the future holds. We are trying to give our son the best life possible and will continue to fight with Duchenne UK until we find a cure.
Here is Harry and Rachel, speaking on BBC News about their latest push for a new, life-extending treatment to be administered at Alder Hey.