Brave fight ends for Rhys, 7

Rhys Daniels: Two transplant operations

Rhys Daniels, who became the first child to receive a bone marrow transplant in a bid to cure a rare genetic disease, has died.

His case came to national attention when his parents went to the High Court in London over the closure of the hospital where he was being treated.

Rhys suffered from Batten's disease - a progressive disorder that causes blindness, dementia and immobility and is usually fatal by the age of 10.

Charly is also stricken by the genetic disorder

In 1993 he became the first child to undergo a bone marrow transplant after his parents Barry and Carmen spent months persuading doctors to carry it out.

Then Westminster Children's Hospital, where he was being treated, was closed.

When the Daniels challenged the decision in the High Court, it concluded that the closure had cost Rhys valuable time.

Two transplants were eventually performed in Bristol, but both failed and last September Mr and Mrs Daniels decided not to put Rhys, or his sister Charly who also has the disease, through more painful treatment.

He died at his home in Essex on Monday just a week before his eighth birthday. His funeral will be held on Christmas Eve.

Last September Mr Daniels spoke of the heartbreaking decision to refuse further treatment for the children in the knowledge they were becoming increasingly prone to infections.

Parents Carmen and Barry: Agonising decision

He said: "We don't want them being rushed to hospital and having needles and tubes stuck in them. We don't want them to be resuscitated.

"We want them here at home where we can soak them up in our love and let them die peacefully.

"It was agonising, dreadful, but we have to do what is best for our kids. It is not a decision we ever wanted to make. It is not a decision any parent ever wants to make."

Mr and Mrs Daniels, who have a healthy three-year-old daughter Bliss, decided to set up the Daniels Charitable Trust, which raises money for children with Batten's.