Augusto Odone was a World Bank economist who, with his wife Michaela, challenged the established medical consensus that their son Lorenzo was destined to die within a few years of being diagnosed with adrenoleukodystrophy, ALD, a rare neurological disease that destroys the brain.
Unwilling to accept the doctors' bleak prognosis, which would leave their son paralysed, blind and unable to speak, Odone, who had no formal medical training, took early retirement in 1987 and embarked upon an incredible journey in search of a cure.
He scoured medical journals, consulted scientists and doctors, and ultimately studied medicine, bio-chemistry, and the connection between brain damage and a build-up in the blood of long-chain fatty acids. It is this dangerous fatty acid that accumulates in the nerve cells and damages the myelin coating (or sheath) of the nerve fibres, resulting in the nerves being unable to transmit messages to the rest of the body.
The disease predominantly affects boys because it is caused by a defect on the X-chromosome, of which males have only one.
After a number of years of tireless research, Odone's exhaustive quest culminated in a concoction which became known as Lorenzo's Oil, a mixture of acids derived from olive and rapeseed oils. The Odones eventually persuaded an elderly British chemist, Don Suddaby, to distil the formula and produce an edible version. Yet there were reservations as to whether this was safe for humans, as one of the acids, erucic acid, was known to be harmful to mice.
However, with Lorenzo's quickening deterioration, Odone's wife's sister was persuaded to test it. There were no ill effects. The oil was then given to Lorenzo with dramatic results; to the astonishment of the medical world, his long-chain fatty acids started to drop to normal levels. This was the first agent to have demonstrated a therapeutic effect by halting the destruction, by the disease, of the myelin sheathing of the nervous system.
Despite the cynicism of the medical profession, Odone patented the oil. Subsequently, a study published in 2005, based on research with 84 boys, demonstrated its effectiveness in preventing the onset of symptoms, accompanied by a strict, low-fat diet, for a majority of boys diagnosed as having the ALD gene but not yet displaying traits of the condition. The discovery of the preventive value of the oil unfortunately came too late for Lorenzo, whose neurological position was irreversible.
However, the oil's success in delaying the onset of symptoms in Lorenzo was demonstrated by the fact he lived to the age of 30, far beyond doctors' predictions, and was a testament to the Odone's devotion and ingenuity. Lorenzo eventually succumbed a day after his 30th birthday in 2008. Augusto always maintained that the treatment was responsible for giving Lorenzo many extra years of life.
The Odones' unrelenting quest for a cure for their son was so remarkable that Hollywood dramatised it in the 1992 film Lorenzo's Oil, which starred Nick Nolte and Susan Sarandon.
Born in Rome in 1933, Augusto Daniel Odone was brought up in the small village of Gamalero, near Acqui Terme in the Piedmont region of north-western Italy. In 1969 he secured a position with the World Bank as economist in Washington. In 1978, he and his second wife, New York-born, Michaela, had Lorenzo, a precocious, bright child, with a thirst for knowledge. Shortly afterwards, the bank posted them to the Comoros, off the east coast of Africa, where, aged three, Lorenzo quickly learnt French, but where reports began to surface of his erratic behaviour and deteriorating attention span.
The family returned to the Washington area when Lorenzo, aged five, was already fluent in English, French and Italian. His seemed destined for Harvard. But by 1984, when he was six, Lorenzo's behavioural problems had worsened and he began to suffer from blackouts and memory lapses, symptoms akin to those of stroke victims. At first, Odone believed his son might have contracted a tropical disease in the Comoros Islands, but a brain scan finally confirmed that Lorenzo was suffering from ALD.
By the time the oil was ready in 1987, Lorenzo was blind, deaf and almost completely disabled physically. He could signal "yes" and "no" by blinking or moving his fingers. His condition required 24-hour medical care and five nurses worked in shifts, with his parents. Unable to swallow saliva, he had to be suctioned every few minutes. Every bodily function had to be monitored, and he had to be fed five times a day through a tube.
Years before Lorenzo's death, Odone said he no longer used the word "cure" in connection with his son's treatment and care. "That is for the next century, when they find a way to repair genes," he said. "But I still have hope, because without hope...."
In 1989, the Odones founded the Myelin Project, an organisation to promote research into ALD, and other disorders that destroy the myelin sheath, such as the more common multiple sclerosis.
Following the death of his son in 2008, for which Odone blamed himself , believing he had not called an ambulance soon enough, the grieving father returned to his home region of Italy to be nearer his other two children and his grandchild. Thereafter, he wrote a book, Lorenzo and His Parents, which was published in May this year.
In recognition of his work, Odone received an honorary doctorate from the University of Stirling. Until his death at the age of 80, he continued to raise funds for the Myelin Project. He died from organ failure complicated by a lung infection. He is survived by his daughter Cristina and son Francesco from his first marriage.
Cristina ventured that her father's legacy was to "try and try and try again, even when all around you say it is impossible". He even outlived his own doctors' "death sentence" by eight years. She added, "Till the very end, he would not accept either medical wisdom or a death sentence that nature would impose."
Augusto Odone, economist; born Rome, 6 March 1933; married Ulla Sjostrom (divorced; two children), married Michaela Murphy, (died 2000; one son, died 2008); died Acqui Terme, 25 October 2013.