Lorenzo's Oil boy succumbs, 20 years later

Published on Saturday 31 May 2008 19:59

THE man whose parents' battle to save him from an incurable nerve disease was depicted in the inspiring movie Lorenzo's Oil has died after living more than 20 years longer than doctors had predicted.

Lorenzo Odone was expected to die in childhood after being diagnosed with the condition, ALD, at the age of six. But he defied the predictions, apparently with help from the oil treatment patented by his father, Augusto, to live until the day after his 30th birthday at his Virginia home.

Odone said his son contracted aspiration pneumonia after getting food in his lungs. He began bleeding heavily, and was dead before an ambulance reached their home.

"He could not see or communicate, but he was still with us," Odone said. "He did not suffer. That's the important thing."

As a child, Lorenzo was found to have adrenoleukodystrophy (ALD) and doctors told his parents that the disease – caused by a genetic mutation that causes the neurological system to break down – would kill him within two years.

The disease leads to the accumulation of 'very long chain fatty acids' in cells. Passed from symptomless mothers to their sons, it destroys the sheath around nerve fibres, impairing their ability to conduct signals. After the onset of the disease, children lose the ability to walk or talk. Death usually follows soon afterwards.

The story of how his parents, an economist and an editor without scientific backgrounds, created an oil they claimed helped their son fight the disease was made into a film in 1992.

The scenes portraying a family battling against the medical establishment earned Susan Sarandon an Oscar nomination for her performance as Lorenzo's mother, Michaela. Nick Nolte played Augusto.

Lorenzo's parents developed what they believed to be a treatment, a blend of erucic and oleic acids found in natural cooking oils.

They fed it to Lorenzo with the processed food he received through a tube. The oil mixture is meant to reduce the fatty acid build-up.

The family said that Lorenzo, who was in a vegetative state, regained some ability to communicate, wiggling his fingers or moving his eyebrows.

Odone plans to take his son's ashes to New York to mix them with those of his wife, who died in 2000 from lung cancer. Then, he said, he will sell his home in Fairfax, Virginia and move back to his native Italy. He plans to write a book, "to tell the story of Lorenzo as a way to make him live on".

Medical opinion is still divided on Lorenzo's Oil. A study of 84 boys, published in 2005, showed a treatment made from olive and rape seed oils – patented by Odone – can prevent the onset of symptoms in most boys.

However, a study by Dr Hugo Moser of Johns Hopkins University school of medicine tested the oil with 70 children, from the time of their first symptoms until they lost sight and movement. The oil, Dr Moser concluded, "did not make any difference".