Augusto Odone, a World Bank economist who received international attention for his efforts to find a treatment for the rare degenerative brain disease that afflicted his son Lorenzo — a struggle portrayed in the movie “Lorenzo’s Oil” — died Oct. 24 in Acqui Terme, Italy. He was 80.
The death was confirmed by Patti Chapman, president of the Myelin Project, based in Pacific Palisades, Calif. Mr. Odone and his wife, Michaela, founded the organization in 1989 to foster research into their son’s disease, adrenoleukodystrophy, and other disorders that destroy the myelin sheath, which allows brain cells to communicate with one another.
Mr. Odone’s death came five years after the death of his son, who lived to be 30 — far longer than most doctors had predicted. Mr. Odone, a native of Italy, spent much of his World Bank career in Washington and moved to Acqui Terme from Fairfax County after Lorenzo’s death. His daughter, Cristina Odone, said the cause was organ failure complicated by a lung infection.
Mr. Odone took early retirement from the World Bank in 1987 to care for Lorenzo, whose condition had been diagnosed a few years earlier, when Lorenzo was 5. The child began having violent tantrums and was experiencing loss of hearing, balance and coordination. Years later, the Odones recalled Lorenzo saying: “Mummy, I cannot hear you anymore. Can you raise your voice?”
Mr. Odone thought his son had contracted a tropical disease during the brief period the family lived in the Comoros Islands, off the southeastern coast of Africa. A brain scan later confirmed that Lorenzo was suffering from adrenoleukodystrophy, known as ALD. The family was told that Lorenzo had two years to live, which propelled Mr. Odone into an exhaustive search for a cure.
ALD is a genetic brain disorder caused by a buildup of fatty acids that accumulate on nerve cells and damage the delicate coating on brain cells. The disease, which attacks the myelin sheath, primarily affects boys because it is caused by a defect on the X chromosome, of which males have only one.
Mr. Odone, who had no medical training, devoured medical journals and consulted doctors. He came across an article that said animals fed olive oil had lower levels of long-chain fatty acids. He developed a concoction derived from a mixture of oils and took it to a leading scientist, Hugo Moser, a neurologist at the Kennedy Krieger Institute in Baltimore, who was studying ALD.
Moser was wary because one of the acids in the concoction, erucic acid, was shown to be harmful to mice. But as Lorenzo deteriorated further, Mr. Odone’s desperation led him to a biochemist in Toronto who was less concerned about the potential harm to humans of erucic acid. The biochemist said erucic acid was a derivative of rapeseed, or canola, oil, and was often used in Asia as a cooking oil.
Mr. Odone persuaded his wife’s sister to try it. She lived.
He began feeding it to his son and maintaining records of its seemingly positive effect on Lorenzo’s levels of long-chain fatty acids. Mr. Odone persuaded a retired British chemist to come out of retirement to help produce the oil extract.
It was around this time that Hollywood dramatized the family’s search for a cure in the 1992 film “Lorenzo’s Oil,” which starred Nick Nolte and Susan Sarandon as the Odones.
Moser eventually agreed to study the long-term effects of “Lorenzo’s oil” on boys known to be at high risk of ALD.
In 2005, Moser published his findings in a peer-reviewed journal that followed more than 100 boys with the ALD gene — all under 6 and symptom-free before the 10-year trial. The study concluded that Lorenzo’s oil appeared to prevent the onset of symptoms in a majority of boys who had the gene but had not shown symptoms of the disease. After the onset of symptoms, the treatment does not stop the disease but does extend the patient’s life, according to the study.
The Food and Drug Administration still considers the treatment experimental and has not approved it. Moser died in 2007, but his wife and scientific collaborator, Ann Moser, is continuing the research.
Augusto Odone was born in Rome on March 6, 1933, and he grew up in Gamalero, Italy. He was a law graduate of the University of Rome and later received a Fulbright scholarship to study at the University of Kansas. He worked for a bank that specialized in reconstruction and development in southern Italy before joining the World Bank in 1969.
His first marriage, to Ulla Sjostrom, ended in divorce. His second wife, the former Michaela Murphy, who was Lorenzo’s mother, died of lung cancer in 2000.
Survivors include two children from his first marriage, Cristina Odone and Francesco Odone; and a granddaughter.
Mr. Odone credited Michaela with keeping Lorenzo as physically comfortable as can be in his condition. “It was her sacrifice for Lorenzo,” Mr. Odone told The Washington Post after her death. “She was with him 16 hours a day, continuously. She did not go out. We did not entertain people. We did not travel. We did not take vacations. It wore her out.”
A few years before Lorenzo’s death, Mr. Odone told the London Daily Mail that 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 . . . ” His voice trailed off.
“We started on this path because it offered hope for Lorenzo,” Mr. Odone added. “It is a long shot, but to me a long shot is better than no shot at all.”