Young boy with rare form of muscular dystrophy prepares to take on charity challenge

A young boy living with a rare muscle-wasting condition is gearing up to tackle a charity challenge in a bid to raise money for others in need.

Bertie Kay, Southport, has Ullrichs CMD – a rare form of muscular dystrophy thought to affect only one in every one million people.

Due to his condition, Bertie has difficulty walking and has to use a wheelchair to get around.

However, the youngster is determined to tackle an upcoming charity challenge in London, which has been described as the world’s first ever ‘push/run’ event.

Parallel London offers participants two methods of raising money for a charity of their choice – a traditional fun run or a ‘super sensory’ 1km challenge which has been specially designed for fundraisers living with disabilities.

Bertie will be tackling the latter – which invites participants to take on an obstacle course of multi-sensory experiences covering a distance of 1km.

The brave six-year-old will be raising money for overseas charity AbleChildAfrica, which helps disabled children living in different parts of Africa.

Commenting, Bertie’s father, Matt Kay, 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.”

Alison, the youngster’s mother, said: “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.”

At EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions, including muscular dystrophy. For more information about the services we provide, please contact us today.