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Alison and Matthew Kay’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.

Ullrich congenital muscular dystrophy is a condition that will cause muscles to weaken and waste, and causes progressive stiffness of the muscles and spine. The condition makes it increasingly difficult to walk and many children develop respiratory problems as the muscles in their chests weaken.

Bertie is a bright and happy young boy who has a love of snakes and enjoys swimming. He also loves entertaining people particularly when he is playing the drums! He has just started Year 6 of primary school and is now using his wheelchair to get from A to B. 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 in itself can make school life more challenging.

Bertie’s Mum Alison said:

Bertie was diagnosed at a clinic at the Centre for Life in Newcastle by Professor Volker Straub, we were given plenty of opportunity to ask questions and Professor Straub was very supportive but because the condition is so rare there were still a lot of unknowns.

We first heard about Muscular Dystrophy UK when looking for more information on the internet and have found the Information service and the Advocacy service invaluable. In fact, we would have been completely lost without the support of Muscular Dystrophy UK.

The family started fundraising for MDUK in 2015 and in 2016 set up Family Fund Bertie’s Buccaneers and have gone on to raise over £40,000 through various fundraisers including Go Orange, Music for Muscles and even had a supporter take on an Ironman event!

Net proceeds from Bertie’s Buccaneers fundraising will go towards research into Ullrich muscular dystrophy

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