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. They set up a Family Fund the follow year and have gone on to raise over £40,000.
Bertie's Buccaneers
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 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 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.
We found the Information and Advocacy services offered by Muscular Dystrophy UK invaluable. We would have been completely lost without them.
All funds raised by Bertie’s Buccaneers will go towards research into Ullrich congenital muscular dystrophy.
