Dr Ali Kay’s youngest son, Bertie, 14, lives with Ullrich congenital muscular dystrophy. Since his diagnosis a decade ago, the family have raised over £42,000 for us to help fund research into his condition. We caught up with Ali to find out why her latest fundraiser, the South West Coast 50 Ultra Challenge, is special to her.
“It’s our happy place but also where we’ve seen Bertie’s muscular dystrophy play out”
Bertie was diagnosed with Ullrich congenital muscular dystrophy in 2014, aged two. He’s a bright and happy teen, but his condition means that he can’t run, jump, climb stairs or get up from the ground without help. Along with visible signs of his condition, like having to use a wheelchair, he has less obvious challenges to deal with, like breathing properly and having bad fatigue. This makes life tough for a teenager as he just wants to keep up with his friends.
Since Bertie’s diagnosis, as a family we’ve raised money through our Muscular Dystrophy UK family fund ‘Bertie’s Buccaneers’. There have been major breakthroughs in genetic medicine over the last decade, 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. Not just for Bertie, but all the other children with muscle weakening conditions.”
That’s why we continue to fundraise and take on different challenges. For this latest one, Bertie’s older brother Archie, 19, is joining me. On Saturday 2 August, we’ll set off to complete the South West Coast 50 Ultra Challenge, a demanding 50km hike which includes over 1,600m of climb. We’re hoping to do it in under 12 hours.
When I spotted the challenge, I knew I had to do it. The location (Somerset/Exmoor) is significant as we’ve been holidaying in Exmoor every summer since Bertie was a baby. Without a cure or treatment to slow his condition progressing, each visit he has been able to do less. It’s hard for Bertie and all of us as we really notice the things he can no longer do, but we have so many special memories of the area – it’s our happy place.
All the locations along the route mean something to us as a family, whether it’s a favourite picnic spot or somewhere we’ve had to overcome a challenge due to Bertie’s condition, so I know it will bring a lot of memories flooding back.
“It’s our happy place but also where we’ve seen Bertie’s muscular dystrophy play out.”
Places on the route that hold special significance include Dunster Castle, where we visit every year; Dunkery Beacon – the summit of a walk we’ve done with Bertie in his all-terrain wheelchair; and the River Horner, where we used to all be able to swim together.
My eldest son Archie decided to join me for this challenge and I’m looking forward to spending the mother-son time with him. It will be the first time he’s done something like this, but he’s grown up with Muscular Dystrophy UK as part of his life. He’s seen the challenges that Bertie and others like him face and wants to help make a difference to the wider community.
“As brothers, they’re extremely close and Archie helps Bertie a lot, both physically and emotionally. He’s very kind-hearted.”
It’s important to us a family to support Muscular Dystrophy UK, not just in terms of funding research, but to raise awareness and ensure people get the help they need. We’ve found the information service offered by the charity invaluable – I think we’d be lost without their support.
Support Ali and Archie’s fundraising
By supporting Ali and Archie’s efforts, you’ll be contributing to crucial research for individuals living with muscle wasting conditions.
Inspired by Ali’s story?
There are so many ways you can fundraise for people living with a muscle wasting or weakening condition. No idea is too big or too small.
