Sport has always played a part in my life, from gymnastics to snowboarding, from wakeboarding and most recently boxing. I even work in sport. I can’t remember a time without it. As a 6 yr old I remember feeling the hairs stand on my neck watching the film of the Nadia Comaneci story as her coach asked her “do you believe little girls can fly?” I’ve been trying to fly ever since. That passion and exhilaration is just part of who I am today and through my wakeboarding website WAW I try to get every girl to feel the empowerment of sport.
Imagine, then for a moment if you can’t do any sport, if from the age of 2, you’re sentenced to a life of never speaking, most likely never walking, least of all having any sporting influence…… due to Rett Syndrome. This debilitating chromosomal disorder affecting the neurological development of girls, causes the development of previously normal healthy girls who’ve just started to walk and talk, to be dragged backwards. They lose the power of speech and as many as 50% will never walk. It affects girls because boys with the disorder don’t tend to survive past a year. BUT something can be done, it can be reversed. Wouldn’t you try to help?
When friend and colleague Marc Souter’s daughter Dylan was diagnosed with Rett Syndrome, the opportunities that evaporated before her just broke my heart. This beautiful little girl with so many of life’s joys immediately inaccessible to her. BUT Rett has been reversed in the lab, it IS possible. It’s the only chromosomal defect that has been reversed and successful reversal in sufferers opens up a massive potential for a whole host of currently incurable neurological disorders. This research will help hundreds of thousands of people the world over. Rett Syndrome research is vital in implementing its reversal and restoring quality of life to sufferers and their families affected by this cruel disorder.
On July 21st, myself Anna and Issy will be doing a sponsored skydive to raise funds and awareness for Rett Syndrome to help accelerate its reversal and give sufferers a chance to enjoy so many normal experiences. We have individually covered the full cost of the skydive, so every penny donated will go to Rett Syndrome Research Trust UK. Please give what you can and together we can do something towards giving little girls and their families suffering with Rett bigger smiles, for longer.
The Cure for Dylan campaign is raising funds for Rett Syndrome Research Trust UK. Anything at all you can help with will make a difference. Please help.
Please donate to our JUST GIVING PAGE and don’t forget GIFT AID if you’re a UK tax payer. Thanks everyone, you’re giving hope to many special little girls and their families. We’re aiming to raise £1000 but we’re hoping to smash this target to pieces. Thanks everyone in advance.
Sarah, Anna and Issy