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Nick Sireau's sons Julien, 12, and Daniel, 10, suffer from alkaptonuria, a genetic disorder affecting just one in 500,000 people.

Only 60 people in Britain and 1,000 worldwide suffer from the disease, known as AKU. It causes bones to weaken and blacken, and can trigger valvular heart disease and kidney stones. Its unusual symptoms include ear wax turning red or black and urine turning brown or black when exposed to air.

"We've found an amazing treatment," he said. "If given early enough in life to sufferers, it's effectively a cure."

Early tests found that nitisinone, already administered to treat another genetic disease, can prevent a range of symptoms in AKU sufferers. five of whom died last year from the disorder.

Mr Sireau's patient research group the AKU Society has been awarded a £5 million European Commission grant to finance clinical trials, which will begin in December.

He said both sons are now producing black ear wax and urine, and he is now attempting to raise funds to aid up to 140 AKU sufferers' travel costs to the trials, which are not covered by the grant.

"The more patients involved in the trials, the more effective the trials will be," he said.