Augusto Odone, a former World Bank economist, defied skeptical scientists to invent a treatment to try to save the life of his little boy, wasting away from a neurological disease, and to give hope to other children afflicted with the same genetic defect.
Odone, 80, died on Thursday in his native Italy, five years after the death of his son Lorenzo, who astonished doctors by surviving decades longer than they predicted.
The concoction, derived from natural cooking oils, became known as Lorenzo’s Oil, which was also the title of a movie depicting the relentless efforts by Odone and his late wife, Michaela, to try to find a cure.
Cristina Odone told The Associated Press on Friday that her father had died in Acqui Terme, a town in northwestern Italy in the area where he grew up. She said he had lived for many years with a series of medical problems and had died of organ failure precipitated by a lung infection.
“What was so remarkable about my father is that he would never accept a death sentence, either for his own son or for himself,” she said. “He was supposed to die eight years ago, six years ago, four years ago. Till the very end, he would not accept either medical wisdom or a death sentence that nature would impose.”
Lorenzo was diagnosed with adrenoleukodystrophy, a neurological disease also known as ALD, when he was 6 and living in the Washington, D.C., area. Doctors predicted the rare genetic disease would kill him in a few years and that he would not survive childhood. But Augusto and his wife Michaela refused to accept an outlook of doom.
Odone took early retirement and began work. After scouring medical journals and consulting scientists and doctors, he taught himself enough science that in 1987 he came up with a concoction derived from natural cooking oils.
He turned to a British scientist to produce an edible version, eventually contained in a bottle carrying the simple name “Lorenzo’s Oil.”
ALD is caused by a genetic defect that destroys the sheath covering nerve fibers. It is characterized by the buildup of substances in the blood called long-chain fatty acids. Lorenzo’s Oil is believed to return acid levels to normal when the condition is diagnosed early and the oil is accompanied by a strict, low-fat diet.
New York-born Michaela Odone died of lung cancer in 2000. Lorenzo died in 2008 at age 30. His parents had cared for him at home as he became paralyzed and lost the ability to talk, needing 24-hour care.
After his son’s death, Augusto Odone returned to his home region of Italy and wrote a book, “Lorenzo and His Parents.”
Cristina Odone ventured that her father’s legacy was to “try and try and try again, even when all around you say it is impossible.”
Odone is survived by Cristina and son Francesco. Cristina Odone also named as part of the surviving family Oumouri Hassane, the man who cared for Lorenzo from his early years.