In 1992 Barry and Carmen Daniels were given the devastating news that their daughter Charly, 4, had Late Infantile Batten's Disease - a devastating neurological degenerative childhood disease which leads to an early death - usually 3-4 years from onset. It was imperative that their son Rhys, aged 15 months, was tested - a test which sadly proved positive. When the Government decided, without consultation, to close the Westminster Children's Hospital a high profile court case followed. After a delay of 8 months, Rhys had his pioneering bone marrow transplant (his only hope of survival) at Bristol's Royal Hospital for Sick Children.
With no idea where they would live, how they would pay for accommodation, with one desperately sick child and another facing a bone marrow transplant, the family uprooted and headed for Bristol. The Daniels family were fortunate - as a result of media coverage, Harrods boss, Mohammed Al Fayed rented a flat in Bristol for the whole family to use whilst Rhys was in hospital. Money that had been sent by well-wishers was used to rent a flat for another family to use whilst their daughter was treated at Bristol. And so the idea for the Rhys Daniels Trust was born.
Following a second bone marrow transplant, Rhys sadly lost his brave battle for life on 21 December 1998. Charly who had amazed everyone with her ability to hold onto life, sadly passed away on 10 February, 1999. Barry and Carmen Daniels decided to use their own experience and to channel their efforts into the Rhys Daniels Trust which would be a lasting tribute to the courage of their children.