“Cherry is my half sister. When she started to speak as a young toddler, the array of words and sounds she parroted and learnt was amazing. She was so bright and full of beans! To see her mobility and speech gradually decline was confusing and heartbreaking. It took a long time for us to eventually receive the news that she had Rett syndrome.

It was devastating for my family. Having suspected something was not quite right, suddenly we were told that she will be profoundly disabled, with multiple health problems including epilepsy, a curved spine, breathing problems and feeding difficulties. I’m so proud of Pete for raising funds for this awesome charity”, Jemma x

Rett syndrome is a rare, severe genetic neurodevelopmental disorder that almost exclusively affects girls, causing a progressive loss of motor and communication skills after a period of normal early development.

Rett UK is there to pick up the pieces; emotional support, advice & information, advocacy, reducing isolation, empowering families, building emotional resilience and helping the person with Rett syndrome live a life worth living.