Emily Ward
Emily's page
Fundraising for Reverse Rett
Story
Rett Syndrome is a neurological disorder, affecting around 1 in 10,000 people. It almost exclusively affects girls. Boys with Rett Syndrome usually die within the first year.
Children born with Rett Syndrome appear to develop normally for the first year of their lives before regression occurs. Previously healthy little girls who may have begun to walk and say their first few words suddenly see their development dragged backwards.
Now 1 in 10,000 may not seem a lot but that's 6,500 girls every year being born with Rett Syndrome - 17 girls every single day!
Rett can occur in any family, at any time. It is not hereditary. It affects all racial groups and ethnicities. Every 5 hours a girl is born with Rett Syndrome.
Dylan Souter is three years old and up until the age of one she began to develop like any other little girl. Dylan loved to crawl and explore the world around her. She was close to being able to walk & had begun to say a few words. Then these skills started to disappear. Slowly at first, then suddenly.
Dylan became tired, weak, confused, anxious and withdrawn. She lost the ability to communicate and the use of her hands. She could no longer play with toys or feed herself. She began to suffer terrible headaches and muscular pain. Dylan was diagnosed with Rett Syndrome shortly after her second birthday.
With a daily regime of physiotherapy, occupational therapy and speech & language therapy, Dylan also has frequent hydrotherapy, music therapy and osteopathy. These therapies help to stop further regression and to limit the chances of developing more complications. Still, it is likely that Dylan will suffer from epilepsy, breathing difficulties and scoliosis. Most girls with Rett Syndrome will end up in a wheelchair being fed through a tube. Life expectancy is poor.
The ridiculous thing is, It doesn’t have to be this way!
In 2007 Rett became the FIRST children's brain disorder to be REVERSED in the lab and has the POTENTIAL to be the world's first CURABLE brain disorder.
But here's the problem...
- There is no government or lottery funding for research into Rett Syndrome.
- Scientists rely wholly on private donations, despite the huge and wide-reaching promise of their research.
- There will be no cure without more funding
Running 26.2 miles through the beautiful City of London is a privilege compared to the struggles that face little girls like Dylan and their families every single day. If you could spare any pennies to sponsor me for the few hours of hard work I'll be doing on Sunday 21st April 2013, you would be helping make a difference to the lives children with Rett Syndrome for years to come. Any contribution, no matter how big or small, would be truly fantastic.
Thank you x
To learn more about Dylan's story and other fundraising events please visit www.curefordylan.com
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