Gerald Wellesley

London Marathon 2009 Skye Wellesley

Fundraising for Skye Wellesley Foundation

Story

Skye Wellesley (left) was sadly diagnosed with Rett Syndrome in June 2008. Her father Christopher, after some research, decided to start the Skye Wellesley foundation.

The foundation is a registered charity (Charity No 1127939), with a mandate to provide funding for research into finding the cure for Rett. In particular, it will seek to fund the inspiring research of Professor Adrian Bird atEdinburghUniversity, who has raised real hope of a cure and would be a worthy recipient of all of our support. The one major advantage we have, is that the gene that causes the syndrome has been located.

We would ask that you give whatever you can to help fund research into this awful illness.

It's all over.

Thank you all so much for your donations.

Gerry, Charlie and Christopher

About the charity

Skye Wellesley Foundation

Verified by JustGiving

RCN 1127939

www.swfoundation.org.uk/

In June 2008 Skye Wellesley, aged one, was diagnosed with Rett Syndrome. Not being aware of the existence of this condition at the time, the horrific days and weeks that followed we, her family, discovered what it means to us and to about 2,000 other families in the UK. Rett Syndrome is caused by a sporadic genetic mutation on the MECP2 gene located on the X chromosome. This microscopic change in the structure of chromosomal proteins has an overwhelming impact on the life of the 1 girl in 15,000 statistically around the world. Most obviously, Rett chronically slows these girls neuro-development, very few Rett girls will ever speak and only half of them will walk. Behind the physical incapacity, there are also additional problems as Rett girls are prone to scoliosis, difficulties with digestion, epilepsy and fits of extreme anxiety. We set up the charity to fund research into finding a cure for Rett. There has been very significant progress towards that goal over the last four years and I'm pleased to say that Professor Adrian Bird at Edinburgh University is at the forefront. Research can be very focused as the gene, MEPC2, that causes Rett was pinpointed ten years ago. Finding a cure for Rett would bring so much happiness to many girls who are prisoners within their own bodies, plus it will help to find a cure for other genetically related disorders. Thank you