Story
Thanks for taking the time to visit my JustGiving page.
Rett syndrome is a rare and very severe neurological disease which almost exclusively affects girls. My niece Dylan was diagnosed with Rett syndrome about a year ago. Dylan developed like any other little girl until the age of one - crawling, playing and saying a few words. She can no longer walk, talk or use her hands and she will face further challenges in the future. Most girls with Rett Syndrome will end up in a wheelchair being fed through a tube. Life expectancy is poor.
Dylan is not alone - every 5 hours a girl is born with Rett Syndrome.
Recent research has given hope that a cure is possible.
The below web link gives more details about my niece and the latest developments in the search for a cure.
http://www.curefordylan.com
I am not a runner and have not run more than 4 miles before but both my wife (Joanne) and I are going to be running this year to raise funds.
We are starting with a 10k run in July followed by the half-marathon in September.
Any donations would be much appreciated.
Phil
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