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.