Story
My daughter, Beth, has Rett Syndrome. This won't be the first time you've read my story as I've done plenty of challenges over the years but until Beth can lead the life she deserves I'll continue to tell it.
I'm joining a group of people dedicated to raising money for Rett Syndrome Research Trust UK. We are walking 60km in under 24 hours across the South Downs on May 11th 2013 to speed treatments for girls like Beth who are suffering with Rett Syndrome.
Beth becomes a teenager this year. Most Dads of girls turning 13 would normally be worried about boys, underage drinking etc. I worry that I'll go in to wake her up for school and she won't be breathing! This is the reality for girls with Rett Syndrome.
Rett Syndrome is horrible! It robbed my little girl of every skill she'd learnt when she was 18 months old. Waving, clapping, crawling and speaking all disappeared one by one. Rett Syndrome is relentless! Every year new symptoms appear, epilepsy, scoliosis, breathing problems, eating problems etc, etc, etc. It means 24 hour care for Beth, she can't do anything for herself, the people who love her make every decision in her life but there is no brain damage, she is simply trapped in her own body, can you imagine the frustration she goes through? At present Beth has a dislocated hip which she has to live with as the surgeons don't want to operate, can you imagine the pain? I can't!
THERE IS HOPE! In 2007 Rett Syndrome was reversed in the lab! Rett Syndrome Research Trust UK was set up by myself and other parents simply to fund treatments and a cure for our daughters. We need to keep the scientists working, for Beth and all the girls suffering with Rett Syndrome today. Please sponsor me and help Beth lead a better, pain free life!