Couple's agony

The father of two children with a rare and fatal genetic disorder spoke last night of the "agonising" decision he and his wife have made not to let them suffer more treatment.

Rhys Daniels, six, was the first child in the world to have two bone marrow transplants in a bid to cure the Batten's Disease. His nine-year- old sister Charly also suffers from the metabolic disorder which causes blindness, dementia and immobility, and kills most children by the age of 10. Rhys is confined to a wheelchair and is totally blind. His sister can no longer communicate and is unaware of her surroundings.

Yesterday their father Barry, 39, told how he and his wife Carmen decided to let their children die in peace at home in Epping, Essex. He said: "We have decided that when Rhys and Charly next fall ill or get an infection we don't want them being rushed to hospital and having needles and tubes stuck in them. We want them here at home where we can soak them up in our love and let them die peacefully."