Roy Taylor, Ian Miller and Jason Kemp will all be running the Potteries ‘Arf Marathon in Staffordshire on Sunday June 8th in aid of Ataxia UK. This cause is particularly personal for Roy, whose stepson Jack has been diagnosed with the disease, let’s get behind them and offer a few ££’s in support.
Friedrich’s Ataxia is a rare, genetic, neurodegenerative, multi-system, life-shortening disorder.
Jack is a happy go lucky, fun loving 10 year old, but has grown up not being able to do a lot of what most children take for granted. Simple things like riding a bike, playing football and knowing how to jump and hop. Everyday activities like shoes laces, doing up buttons whilst getting dressed and using a knife and folk are an almost impossible challenge for Jack due to his poor co-ordination and balance.
Since his diagnosis Jack’s condition has continued to deteriorate, He now needs the use of a handrail to walk up and down stairs, walks with a wobble in his step and frequent falling over has become the norm. ‘I’m alright!’ has now become something of a catchphrase and as long as he doesn’t hurt himself too much, his first thought is to reassure whoever is with him.
As this progressive disease develops, and without the intervention of treatment, what’s inevitable for Jack’s future although he doesn’t yet know, is that he will eventually become completely reliant on the use of a wheelchair.
Because this neurological disease is still so unknown we desperately need to raise money to raise awareness and fund research programme’s to find a treatment that will slow down this aggressive disease until a cure is eventually found.
The team would welcome the support of the mobile industry, and have set up a fundraising website for easy donation at: www.justgiving.com/roy-jason-ian