Orlena’s friend of over 4 years, Rianna, is nearly 8 years old and suffers from a rare neurological condition called Rett Syndrome.

Girls and women with Rett Syndrome are born healthy. Their families have all the same hopes and dreams for them as any other family has for their baby. But right around the age of 12- 18 months, the symptoms of Rett Syndrome begin to descend, robbing these girls of their speech, their ability to move normally and sending them on a regression which can last their whole childhood. All girls with Rett Syndrome have a healthy MECP2 gene on an inactive X chromosome. Scientists at the charity Reverse Rett are working on a project to identify compounds that can reactivate this healthy but silenced gene.

On Saturday 9th May Sam and I will be walking 10km across the beautiful South Downs and West Sussex countryside, starting and finishing from Goodwood Racecourse near Chichester, to help raise funds for Reverse Rett.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.