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Libby Harris avatar
Libby Harris

Elizabeth's Just Walk 2014 page

walking with the JeddiKnights for Reverse Rett because we want to reverse the effects of MECP2

36 %
£90.00
raised of £250 target
by 9 supporters
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Reverse Rett

We fund cutting edge research to reverse Rett Syndrome for good.

Charity Registration No. 1136809

Story

Thanks for taking the time to visit our JustGiving page.

On the 10th May a team of us will be walking 20K across the South Downs to help raise money for research into treatments for Rett Syndrome and MECP2 disorders. Me, Sarah, Pat, Lorna and Deb are the JEDi Knights...stand by for embarrassing photos of us all dressed as Star Wars Characters...

MECP2 is a duplication of DNA on the Xq28 chromosome.  Unlike Rett Syndrome, which affects girls, MECP2 affects boys causing motor development to be severely delayed or impaired, learning difficulties, recurrent respiratory infections, limited or absent speech and reflux problems.

My cousin Jed suffers from MECP2 and has these various problems.  He is now 5 years old and attends a special  school which he loves going to.  Jed has limited mobility but still manages to open any door in front of him, and can walk fast when he wants something despite having a bit of a wobble.  Although he can not speak he is able to let us know what he wants.  His ability to snatch a piece of toast without you seeing him is an amazing sight to behold.  He has loads of energy, especially at 5 o clock in the morning. He loves to tickle feet, laughs a lot and plays with Molly the dog.  He also loves his food.

There have been some recent breakthroughs in research which means that there is now a real chance of finding ways to reverse some of the devastating effects of this disorder.  It would be the most fantastic result if some of Jed's problems were minimised or reversed, or if children in the future were given a chance to be well.  Your money will help this research to continue so that the impossible becomes possible.

Thank you very much :)

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