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Siân Rogerson hasn't added a story.
In a couple of weeks my 'Sport Billy' fella Michael Warmer will be tackling the Welsh mountains and cycling c. 75 miles in Snowdonia to raise money for Nathan Massey, the son of his childhood neighbour and friend Michael Massey and his lovely wife Amber.
Nathan, a truly gorgeous boy, is 4 years old and has Lesch-Nyhan Disease (LND). This is a very rare genetic disease affecting just one in 2 million births and there is no cure or treatment at present. The long term prognosis for boys with Lesch-Nyhan Disease is currently very poor. Boys with LND suffer weak muscle tone and serious kidney problems. They are unable to develop normally and have a distressing compulsion to self harm.
There are only 25 known children with this disease in England.
As Nathan is growing older the condition is becoming more challenging for him and his family. He needs to wear mouth guards and arm splints which prevent him from biting his mouth and fingers and he is totally wheelchair dependent.
Their charity, the Nathan Massey Foundation raises money towards much needed and expensive specialist equipment and professional treatments. It also aims to raise awareness of the condition and fund research to progress towards the development of a cure. As there are so few boys in this country with the condition Nathan's parents have driven his care and endeavour to create a network of specialists and families to pool knowledge and help all the boys to live their lives to the full.
Please help us to help them. I know we all have so many requests to sponsor people for various causes so we would really appreciate anything you could spare to help this lovely boy and his lovely family (which includes a cheeky younger brother, and Nathan's entertainer, Alistair).
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