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Brave lad with muscle wasting condition to take on Olympic sized challenge

Merseyside school pupil Bertie Kay isn’t letting his rare, one-in-a-million muscular condition stop him from tackling an Olympic Park charity race for AbleChildAfrica this September

Bertie Kay is no ordinary six-year-old. The Merseyside school kid has Ullrich congenital muscular dystrophy – which means his muscles are progressively getting weaker. It’s an extremely rare condition with no cure that will eventually spread to Bertie’s lungs, and taking on any sort of physical challenge is incredibly demanding.

But that isn’t stopping brave Bertie, from Southport, taking to the tracks at the Queen Elizabeth Olympic Park in London next month to take part in the world’s first inclusive push/run event, Parallel London, to take part in in the 1K Sensory Challenge to support AbleChildAfrica.

The inspirational youngster is determined to help disabled children in Africa to go to school, and believes everyone should be able to go to school with their friends even if their bodies don’t work perfectly.

“I’m going to Olympic Park and I’m going to win a medal to show my friend James, and take to ‘show and tell’ at school,” Bertie said. “James doesn’t have a wheelchair but I do. That’s okay. He doesn’t mind. I would be sad if I wasn’t allowed in the classroom.”

Now in its second year, Parallel London takes place on Sunday, September 3. And Bertie can’t wait to take on the Super Sensory 1K challenge.

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Matt Kay, Bertie’s dad, said: “1K may not seem a long way but when you have muscular dystrophy it is an enormous distance. Bertie suffers from all-over muscle weakness and everyday life is exhausting for him.”

Mum Alison and Dad Matt have also set up Bertie’s Buccaneers to raise awareness of this genetic condition – which affects around one in a million people – and to fundraise with Muscular Dystrophy UK for a cure.

Mum Alison added: “It has been a very painful time for us as a family, including Bertie’s siblings Archie [11] and Emmeline [8], but we’re taking a proactive stance on the card life has dealt Bertie and fighting back to change the future for children with disabilities.

1K may not seem a long way but when you have muscular dystrophy it is an enormous distance

“We are so impressed with Bertie’s courage in wanting to take on Parallel London to help other disabled children in the poorest places in the world. He may be young but he is already seeing how problematic life can be if you have an impairment but buildings and attitudes aren’t helpful.

“It is incredibly important that our son Bertie and other disabled children don’t grow up to think of themselves as victims and burdens. Disability and inclusion are global issues. It’s great to see Bertie questioning things and wanting to make things better.”

According to AbleChildAfrica, disabled people represent the world’s largest minority. Around 15% of the world’s population are disabled – that’s 1 in every 7 people. AbleChildAfrica works exclusively with and for disabled children in Africa, and exists to give all children an equal chance in life.

Bertie is doing an incredible thing for some of the most vulnerable children in the world

After recently returning from a trip to visit the charity’s work in Tanzania, Lauren Watters, Programmes and Partnerships Manager, said: “Bertie is doing an incredible thing for some of the most vulnerable children in the world. One of the loveliest parts of our recent trip to Tanzania was meeting children who say the best thing about the clubs we support is that they all get to be together. Disabled and non-disabled.”

You can support Bertie’s fundraising efforts here

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