Story
On Sunday July 13th, I will be running my first ever 10k race to help speed treatment for Rett Syndrome and MECP2 disorders.
Having not even been able to run 10yards a month ago, I will be one of the many thousands of people, taking part in the British 10k through London.
I was touched by a video post on an old friends facebook, about her daughter, who is suffering from Rett Syndrome. Like many of you, I hadnt heard of this condition, but please read her story and watch the video...
http://vimeo.com/84677189 (please open in new tab)
Until her first birthday, Lily was like any other little girl - happy, loving and desperate to explore the world around her. Then things started to change - she lost her speech and her interest in life. Lily was in pain physically and emotionally and no one could give any answers.
Shortly after her second birthday, Lily was diagnosed with Rett Syndrome. A tiny mutation to a single gene has condemned her to a life of profound disability and total dependence. Lily is locked inside her body, unable to communicate. There is no doubt that it is one of the cruellest syndromes and, for her parents, the hardest thing is knowing that things will get worse. Lily faces the prospect of epilepsy, severe spinal curvature, life-threatening breathing problems, feeding difficulties and attacks of acute anxiety.
But there is hope. Rett Syndrome has been reversed under laboratory conditions. Scientists predict that it will be the first curable neurological disorder. The only thing holding back a cure is money. Researchers are wholly reliant on private donations from people like you. As a family Kerry and Colin have watched their brave little girl fight with determination each and every day.
Please help me, to help them, to help her.
For more information about Lily and her Journey with Rett Syndrome please watch this video:
Please donate here, or text Text: MEDE83 and your £'amount' to 70070
Cheers!
Mark