A NORTH Yorkshire boy has died at the age of 11 from one of the world's rarest diseases.
Richard Limbert, who suffered from a metabolic illness, adrenoleukodystrophy (ALD), died in the arms of his heartbroken father, Gary, at their home in Sherburn-in-Elmet.
ALD is a hereditary disease for which there is no known cure. It causes an often fatal chemical imbalance in the body, and it is believed there are only 43 victims world-wide, three of them in the UK.
From being a healthy six-3year-old, Richard was left blind and deaf, and unable to speak or walk, within months of the first symptoms.
Mr Limbert, 36, said today they had been on holiday in the Lake District when his son started to feel poorly.
He said: "We brought him straight home and he died the following morning in my arms.
"I tried to revive him but he was gone. At least he had a smile on his face just before he died."
Mr Limbert said it came as a big shock because although Richard had been in and out of hospital, his sheer will to live had always pulled him through.
He said: "We're devastated - he would have been 12 next month."
A disease similar to Richard's was highlighted by the film Lorenzo's Oil - but although the youngster took the equivalent of 15 teaspoons of the oil each day, his condition deteriorated.
Since 1993, Mr Limbert and his mother Kathleen, 75, have taken it in turns to keep a 24-hour bedside vigil at their home in North Drive, Sherburn in Elmet.
"I don't think we'll ever come to terms with it. He was an extremely brave young lad who must have been in a lot of pain," said Mr Limbert.
"I suppose it's a blessing in a way because at least he's not in any pain now, and isn't suffering fits and spasms.
"Never a day goes by without me asking 'why Richard', but the support we have had has been tremendous.
"He had a bed in the living room, and me and my mother have taken it in turns to stay up with him all night because he has needed 24-hour care for the past five and a half years.
"I would like to thank everyone who has supported us, especially York District Hospital, physiotherapist Margaret Laverack, our GP Dr Stephen Bower, and Martin House Hospice whose staff came to see Richard nearly every week."
Mr Limbert now lives with a new partner, Paula, with whom he has two children, George, 3, and six-month-old Alexander.
He said Sherburn Parish Church was packed for his son's funeral.
He added: "I can't believe Richard has gone - I still get up every morning expecting to see him there."
The Reverend Chris Coates, vicar of All Saints Church, Sherburn, said: "It's very tragic. It's a great relief for Richard, but his family is devastated."
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