Story
Amy is five and looks perfect - but actually every aspect of her life is affected by something called Rett Syndrome. She can't walk, talk or direct her hands. She has epilepsy, a feeding tube in her stomach and a curved spine which means that she has to wear a rigid spinal brace all the time. She receives round-the-clock care from her loving family, who are my friends.
Rett Syndrome is caused by a single defective gene which wrecks havoc on the bodies of girls like Amy. (You can read more about Amy here: http://livingwithrettsyndrome.blogspot.co.uk )
But there is hope. Researchers have successfully reversed Rett syndrome in the lab - and scientists believe that Rett could be the first reversible neurological disorder. Funds are needed for further research and clinical trials.
So I've signed up for a sponsored 60 kilometre walk in May over the South Downs. I really enjoy walking - but still, 60km is a long way!
The Rett Syndrome Research Trust UK is a small but very impressive charity, working tirelessly and effectively on behalf of girls like Amy.
Thank you for sponsoring me.