Our daughter and sister, 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.
On the 1 and 2nd of October 2016, Felix, Ella, Romi and I are running in the Great Scottish Run. Felix & Ella do a 2.5k run, I will run 10k and Romi will do the family mile.
This will be a challenge for Felix and Ella and give me a sore knee but this is nothing compared to what Romi faces on a daily basis. Romi has spend more time in hospital than any child should. Romi can't run but unlike many girls with Rett Syndrome who can't walk a step or even sit or stand without support, Romi can walk. It will be tough but she will do it.
There is hope for girls with Rett Syndrome. In 2007, Prof Sir Adrian Bird, of the University of Edinburgh, demonstrated the reversal of Rett Syndrome in mice with the disorder. Forward to 2016 and there are clinical trials underway across the globe.