Rett syndrome is devastating for a family. Having suspected something was not quite be 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.