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Alison and Matthew’s son Bertie, who lives in Southport with his brother Archie and sister Emmeline, was diagnosed with Ullrich Congenital muscular dystrophy in 2014, aged two years old.

Bertie has Ullrich congenital muscular dystrophy. This is a condition that means his muscles don’t work properly. Along with visible signs like having to use a wheelchair, he has less obvious challenges to deal with like breathing properly and having really bad fatigue. This makes life really tough for a teenager.

Bertie is a bright and happy teen who loves entertaining people particularly when he is playing the drums! His condition also means he can’t run, jump, climb stairs or get up from the ground without help, which is hard for him as he just wants to keep up with his friends. It is fatigue as much as the physical restrictions that affect Bertie daily and a less obvious result of this is difficulty writing for any length of time, which makes school life more challenging.

Since Bertie’s diagnosis a decade ago, there have been major breakthroughs in genetic medicine, but we’re not there yet. It would be life-changing for Bertie if medical research could find a safe way to get new genetic therapies to his muscle cells. We need to keep the research going to make a difference for Bertie and all the other children with muscle weakness conditions.

The family started fundraising for MDUK in 2015 and have gone on to raise over £40,000.

The family have found the Information service and the Advocacy service offered by MDUK invaluable. In fact, Alison said they would have been completely lost without the support of Muscular Dystrophy UK.

All funds raised by Bertie’s Buccaneers will go towards research into Ullrich congenital muscular dystrophy.

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