It is with great sadness that I update this page to let you know that my sister in law Claire passed away on Sunday 7th April.

Claire had Rett syndrome. Every donation raises awareness and helps to support those living with Rett syndrome and their families benefit from the invaluable support that Rett UK provides.

Here is Rett UK‘s explanation of why donations are so important:

Rett syndrome is devastating for a family. Having suspected something was not quite right, suddenly they are told their child will be profoundly disabled, with multiple health problems including epilepsy, a curved spine, breathing problems, feeding difficulties and gut/bowel issues.

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