Sue and Tom Barnley’s son Harry was diagnosed with Duchenne muscular dystrophy in August 2013, when he was five years old. The family have set up the Help4Harry fund to support the Duchenne Research Breakthrough Fund.

Sue and Tom noticed Harry’s calves and legs were bigger than most children his age, and when he started struggling to keep up with his friends when running, the Barnley’s took Harry to their GP. After various GP appointments, blood tests and a later muscle biopsy, Harry was diagnosed with Duchenne muscular dystrophy.

Mum Sue said

” Like many five-year-olds enjoyed his party running round with his friends. He’s a very cheeky chap and takes great pleasure in winding up his older brother Jack!


We have set up the Help4Harry Fund to raise awareness and most importantly funds to help those at the forefront of research into treatments for Duchenne muscular dystrophy. The fund has provided us with something positive to focus on and our family and friends have been fantastic in getting behind us and helping to make it happen.

Help 4 Harry have done many fundraising events since kicking off their fundraising Family Fund. They hold an annual Ball each May – which their family and friends consider an important social event in their calendars!

They also benefit from a lot of their friends and family networks doing fundraising activity for them, everything ranging from participating in Make Today Count skydives, to climbing Mount Kilimanjaro, to hold cakes sales and hot chocolate sales, to incredible cycles and runs – such fantastic support.

Help 4 Harry recently hit the £230,000 milestone of funds raised for Muscular Dystrophy UK. They have not only done amazing things from their own fundraising, but also been featured in one of our Christmas Direct Marketing Appeals and they are always keen to do more.

They have also been involved in our important campaigning – especially around the drug Translana, so their work touches all areas of the charity – they really are one of the Muscular Dystrophy UK family.

How you can help

Setting up a family fund like Help4Harry is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward . Find out more about our family funds.

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