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Nine Hulks raised £4,000 for the A-T Society in the 2018 Hastings Half Marathon.

Nine Hulks raised £4,000 for the A-T Society in the 2018 Hastings Half Marathon.

Wanted: 100 Hulks to take on half marathon challenge

As the Hastings Half Marathon approaches on Sunday 24 March, the call has gone out for 100 runners dressed as the Incredible Hulk to help raise awareness of and funds for the A-T (Ataxia-Telangiectasia) Society, which has been supporting five-year-old Winston Pemberton-Powell since he was diagnosed with A-T in 2015. Nick Terdre reports.

“Our beautiful son Winston was diagnosed at the age of two with this progressive disease, when we began to notice he was struggling with his balance,” say his parents Sara and Joe. “Since then, life has changed unimaginably. The disease has no cure and is life-limiting. We are told Win may live to his mid-twenties, but the disease carries a high risk of cancers.”

Last year nine people dressed as the Incredible Hulk – Winston’s favourite super-hero – took part in the Hastings Half Marathon, raising nearly £4,000 for the A-T Society. Spurred on by the success of this event, the Pemberton-Powell family are now planning to go one better – they’ve set themselves the challenge of getting at least 100 Hulks signed up to run, jog or walk the half marathon.

“It is hard to put into words how much the A-T Society have done for us,” say Sara and Joe. “From supporting us with how to navigate the welfare system to funding equipment, research and coordinating medical expertise when Win has gone into hospital and been met with the panicked faces of consultants who have never encountered A-T, they have never let us down.

“And just as importantly, at those moments when we just don’t know quite how to cope, they have been another family member to us, always listening, always understanding, without judgement.”

The Incredible Hulk is Winston's favourite superhero.

The Incredible Hulk is Winston’s favourite superhero.

Raising awareness

“Due to the extremely rare nature of the disease, it is all the more important that we raise awareness as much as we can. That is why the Hundred Hulk challenge is so brilliant – we can’t fail to be noticed! If there is any part of you that thinks you, or someone you know, might just be able to get around the route in some green face paint, please, please get in touch because YOU CAN!”

A-T is a genetic disease which causes severe disability in children and leads to early death for those diagnosed with the condition. Children born with the A-T gene appear healthy until they are around two or three, when their balance starts to fail, they become wobbly and need assistance to walk.

By the age of 10 many are wheelchair users and at 12 years they may need help to eat while their health and immunity deteriorate. Children and young adults with A-T are particularly prone to developing leukaemia and other cancers. It is quite unusual for a person with classic A-T to live beyond 26 years of age. Currently one in 300 people unknowingly carry the A-T gene.

Based in Harpenden, Hertfordshire, the A-T Society is the only organisation in the UK providing comprehensive information and support to people living with A-T and their families, as well as working actively to improve services and to support and fund medical research with the aim of finding a cure for the condition.

 

Do you have an inner Hulk within you waiting to express himself? Sign up here. Or donate here.

For more information on the A-T society visit their website, write an email or call 01582 760 733.

Posted 12:19 Monday, Feb 25, 2019 In: Health Matters

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