Rhys Daniels Trust
About the Rhys Daniels Trust
 Since 1992, Barry and Carmen Daniels have had to live with the devastating news that their two children were suffering from a rare and incurable neuro-degenerative disorder called 'late-infantile Batten's disease'. Like any parents, they were determined to search for any possibility of a treatment to save their lives. For Charly, aged 4, having already begun suffering the effects of the disease, it was too late for treatment. For Rhys however, 2 years old and being pre-symptomatic there was a window of hope.
Rhys became the first child in the world to receive a bone-marrow transplant in the hope to rid him of this relentless illness. Unfortunately, and to the dismay of the family, the treatment proved unsuccessful.
His courage captivated the nation, but time was always running out for this adorable little boy. Rhys died peacefully at home on 21st December 1998, a week before his eighth birthday. So many have benefited from his short life and he and his sister Charly gave his parents the inspiration to set up the Rhys Daniels Trust to help other seriously ill children.
Charly's condition went through many phases during her last year and she amazed everyone with her ability to hold onto life - sadly, on 10th February 1999, Charly too, passed away. Charly & Rhys Daniels are now together again.
The Rhys Daniels Trust provides unique "Home from Home" comfort and the much needed support for families travelling from all over the UK whilst their child is receiving treatment at specialist hospitals. Through all the fundraising efforts and hard work on providing this special care the charity has proudly opened unique 'Home from Home's' in Bristol, Liverpool, London, Birmingham, Cardiff and Sutton - Surrey... The fundraising efforts are now centred on the next "Home from Home" project in support of the New Manchester Children's Hospital.
Barry and Carmen's third child Bliss is free of the cruel and debilitating childhood illness, as is her sister Hope. This new beginning represents the greatest Gift of Life that the Daniels family could now wish for. A new beginning for a family that has endured so much pain and heartache over the past few years.
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