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.
Mum, Alison, say’s:
Bertie wasn’t making his milestones as a toddler and was finding it difficult to take a few steps at 18 months old and was also struggling to hold drinks beakers so we realised then that something was not right. After talking to our GP we were referred to Alder Hey hospital in Liverpool but, due to the waiting list being on hold, we had to attend a clinic at the Centre for Life in Newcastle to see Professor Volker Straub.
When Professor Straub confirmed the diagnosis he gave us plenty of opportunity to ask questions and was very supportive but because the condition is so rare there were still a lot of unknowns. We were referred back to Alder Hey but had to wait a long time for an appointment which left us feeling unsupported for a time facing a frightening diagnosis.”
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 loves Peter Pan, Pirates and playing on his IPad. He is also a keen singer and can often be heard singing songs by heavy rockers Iron Maiden! He uses a wheelchair with flames on the wheel guards which he loves, and is currently awaiting hydrotherapy and specialist physiotherapy sessions to help strengthen his neck muscles.
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.
We have already started our fundraising journey by organising a garden party last summer as well as getting Bertie’s school involved in the ‘Go Orange for a Day’ event in January 2016 and selling over £500 of tickets in the ‘Great Muscle raffle’. We want to continue to help by doing more fundraising in the future to support the Ullrich CMD Appeal and Muscular Dystrophy UK’s Assistive Technology grants programme provided through its Joseph Patrick Trust”.
How you can help
- Like Bertie’s Buccaneers on Facebook
- Follow Bertie’s Buccaneers on Twitter
- Donate to their fundraising on their JustGiving page
- Check out their website.
Setting up a family fund like Bertie’s Buccaneers is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.