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THE NATHAN MASSEY FOUNDATION hasn't added a story.
This is Nathan Massey...
...our friends’ little boy, who has Lesch-Nyhan Disease
Lesch-Nyhan Disease (LND) is a very rare genetic disease for which there is currently no cure or treatment. Boys with LND suffer weak muscle tone, serious kidney problems, are unable to develop normally and have a distressing compulsion to self harm.
Lesch-Nyhan Disease is very rare: it affects approximately one in two million births. There are only 25 known children with the disease in England and currently the long term prognosis for boys with Lesch-Nyhan Disease is very poor.
Friends of ours, Amber and Mike Massey have a little boy, Nathan, with Lesch-Nyhan Disease. Nathan was 4 in October and the complexity of the condition is beginning to become more of a challenge for him and his family. He has to wear mouth guards and arm splints to stop him from biting his mouth and fingers and is totally wheelchair dependent. Amber, Mike, and Nathan’s family and friends have set up a charity to raise money towards much needed and expensive specialist equipment and professional treatments.
To help them, I am running the Malvern Half Marathon on Sunday 22nd June and am donating all proceeds from this to his charity.
Any support you feel you are able to give is highly appreciated and will make a positive difference to the life of a young child and his family.
Thank you.
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