ST MARY CRAY: Dead bodybuilder's parents publicise rare genetic disorder

THE parents of a bodybuilder who died of a rare genetic disorder are publicising the condition in the hope his death was not in vain.

Lewis King was admitted to the Princess Royal University Hospital, Farnborough, suffering from sweating, vomiting and hallucinations.

Initially doctors thought he was suffering from side effects from steroids but all the tests proved inconclusive and none of the treatments given to the 24-year-old could stop his liver failing.

He was pronounced dead at the hospital a week later and it was only 13 weeks after his death that it was confirmed he had suffered from Ornithine transcarbamylase deficiency (OTCD).

Lewis’s parents Keith and Janice say they now believe a lot of the problems he had in his life were because of the OTCD and they do not want others to suffer like he did.

Mr King said: “He had been to hospital every month from birth to when he was 15.

“He was constantly on the go and diagnosed with dyslexia and dyspraxia and ADHD but it was this illness.

“He had battled all his life and was absolutely fearless but this last battle he never won,” he added.

Mrs King, 55, of High Street, St Mary Cray, said: “To watch your son die is a terrible thing.

“We hope to bring attention to OTCD so maybe just maybe it could save someone’s life.”

They say most of the medical staff at the PRUH had not heard of the condition because it is so rare and only affects one in 80,000 births.

Sixty-one-year-old Mr King said: “They did not know what they were fighting.

“But I have got to say the treatment in the hospital was superb and they did everything they could.”

The resident of Sevenoaks Way, Orpington, added: “There are not many people or doctors that know about it.

“If there is one in 80,000 people [that have it] then there are a lot of people that have it and don’t know about it.”

Lewis was pronounced dead on March 5, a week after he was admitted to the PRUH.

Coroner Dr Roy Palmer recorded a verdict of death by natural causes at Croydon Coroner’s Court on July 9.

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Ornithine transcarbamylase deficiency

• OTCD is a genetic disorder which affects the body’s ability to get rid of ammonia. As a result, ammonia accumulates in the blood and travels to the organs. Another symptom is a buildup of orotic acid in the blood.

• Infants with OTCD may be lacking in lethargic or unwilling to eat, and have poorly-controlled breathing rate or body temperature.

• Babies with this disorder may experience seizures or unusual body movements, or go into a coma.

• Complications from OTCD may include developmental delay and mental retardation. Progressive liver damage, skin lesions, and brittle hair may also be seen. Other symptoms include irrational behavior, mood swings and poor performance in school.

• Treatment includes a low protein diet, preventing the body from breaking down excessive amounts of protein during acute illnesses and taking medicines which remove nitrogen from the body.

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