"WE visit his grave every day and remind Rhys of how much we loved him, and let him know he will never be forgotten."

Those were the words of Rhys Murray's family, as they prepared to hold a birthday memorial service for the brave 11-year-old who spent his life battling a mystery illness. The service will be held in Ryther, near Selby, on Sunday, which would have been Rhys's 12th birthday.

His parents, John and Gillian, and his brother, Emile, who live in the village, today told how they were struggling to come to terms with his death, and said a special trust fund was being set up to help fund nurses' research.

The family said: "It is so difficult to accept Rhys is no longer with us - we spent 99 per cent of our lives looking after the little fellow, and now there is a great big void that is difficult to fill."

But they said they had been uplifted by the messages of sympathy and support received since Rhys's death. They said: "Words cannot describe how we, his family, feel over the loss of such a brave little boy who lit up so many people's lives with his wonderful little smile.

"We have, however, been lifted with the lots and lots of cards from a multitude of relatives, friends, the teachers of his schools, and the medical staff at both York Hospital and Leeds General Infirmary. Thank you all from the bottom of our hearts."

Rhys was born with a mystery disorder which caused him to suffer fits and spasms, and left him unable to walk or talk. As a young child, he also often slept for most of the day, but despite extensive tests, and a visit to Great Ormond Street Hospital in London, the cause of his illness was never diagnosed.

Three years ago Rhys appeared close to death, but made a miraculous recovery after his family prayed at his bedside.

Then in 2002 and 2003, the Evening Press reported the Murrays' attempts to raise money to fund revolutionary exercise treatment for Rhys.

His parents attended the specialist clinic in Sussex twice, but had to stop when Rhys's condition worsened last February. The money is now being put into the Rhys Murray Study Trust Fund, which will help support nurses study particular illnesses. A collection at Rhys's funeral raised £800 for Ward 52 at Leeds General Infirmary.

The family said: "This gives us, his family, great peace of mind in knowing his fund will at least help others."

Rhys's memorial service will be held on Sunday, at 4pm, in All Saints' Church, Ryther.

Updated: 11:05 Tuesday, January 31, 2006