My little girl Romi has Rett Syndrome. Rett is a rare and devastating neurological condition that affects around 1 in 10,000 girls. Romi can no longer talk or use her hands, has limited mobility, epilepsy, blackouts and breathing problems. As things stand, Romi will need round-the-clock care for the rest of her life. Romi has a mild form of the disorder. For 50 days from March 20th until May 8th this year, I am going to join people from across the world to walk, run, row, cycle or swim 5k every day to help fund research into Rett Syndrome. This is a challenge for me. I'm not fit. I don't walk or run anywhere. Romi spends more time than any child should have to in hospital.  But I can walk and I can run. Romi can't walk 5k; she can't run at all. Many girls with Rett Syndrome can't walk a step or even sit or stand without support.But there is hope. In 2007, Prof Sir Adrian Bird, of the University of Edinburgh, demonstrated the reversal of Rett Syndrome in mice with the disorder. Treatments are on the horizon. In fact some of the first therapies are already being assessed in clinical trials. Your donation will help to fund the research that will speed treatments for Romi and all the girls and women living with Rett Syndrome.Thanks for taking the time to visit my JustGiving page.

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