NEW YORK — Augusto Odone, an Italian economist with no medical training who flouted scientific protocol and doctors’ advice to help concoct an experimental medicine that extended the life of his terminally ill son and inspired a Hollywood film, “Lorenzo’s Oil,” died Oct. 25 in Acqui Terme, in northern Italy. He was 80.
The cause was heart failure, said his daughter, Cristina.
Mr. Odone, an analyst for the World Bank who specialized in East African economies, and his American-born wife, Michaela, a translator and linguist, became known internationally both for the ingenuity of the medicine they invented and for the bitter criticism they leveled at a medical establishment that they saw as hidebound and aloof.
The hit 1992 film based on their story, starring Nick Nolte and Susan Sarandon, in turn drew criticism from medical experts for portraying scientists as unfeeling, and for suggesting that Lorenzo’s Oil was a cure.
Lorenzo’s Oil did not cure Lorenzo Odone, the couple’s son, who died in 2008 at age 30 from a rare neurological disease known as adrenoleukodystrophy, or ALD. But the movie, directed by George Miller, a former physician, produced a wave of financing for research that has confirmed the benefits of Lorenzo’s Oil in some cases, and has led to more promising treatments for the once neglected fatal disease.
Mr. Odone and his wife noticed changes in their son when he was about 4. A high-spirited and precocious boy who spoke three languages, Lorenzo suddenly began slurring his speech, stumbling, and having temper tantrums at school.
Doctors first ascribed the symptoms to a tropical disease, possibly contracted in Comoros, off the coast of Mozambique, where Mr. Odone had taken his family while working on a project for the bank. They had recently returned to Washington, where the World Bank has its headquarters.
After two years of testing, though, doctors told the Odones that their son had ALD. Because it was so rare, affecting one in 45,000 people, there was not very much known about it, and it attracted little money for research. What the doctors did know was that it was fatal and incurable, and that Lorenzo would probably not live more than two more years. “We were being told to go home and watch Lorenzo die,” Mr. Odone wrote in an essay published in 2011. “We couldn’t and didn’t.”
They began an improbable mad dash to find a cure. Mr. Odone began studying the biochemistry of the nervous system. He and his wife called doctors, biologists, and researchers around the world to assemble the few far-flung experts on ALD for a symposium.
By the late 1980s — distilling what they had learned through doggedness, serendipity, and ignorance of their own limits — the Odones, with a few scientist allies, developed a chemical compound that seemed to slow Lorenzo’s disease. They called the medicine, an extract of acids in olive and rapeseed oils, Lorenzo’s Oil. It apparently broke down the long-chain fatty acids that cause damage to nerve cells in people with ALD.
The compound has been the subject of long-term studies, one still in progress. Another, completed in 2005, found that Lorenzo’s Oil helped children with ALD if used before they started showing symptoms, but that it was less effective once the degenerative process had begun. The Food and Drug Administration still considers the treatment experimental.
From about the age of 8, Lorenzo was paralyzed and blind, unable to speak, dependent on a feeding tube and kept alive by round-the-clock nursing care and the nearly full-time ministrations of his parents. They talked to him constantly and insisted that visitors do likewise, though no one could be certain about his level of awareness. His parents believed that Lorenzo recognized their voices, loved music, and enjoyed being alive.
Mr. Odone conceded, mainly in interviews he gave after his wife died in 2000, that he had sometimes wondered if that was enough of a life to justify the extraordinary lengths to which he and his wife had gone.
“Lorenzo never regained his faculties,” said Cristina Odone, one of Mr. Odone’s two children from a previous marriage, in a phone interview. But she added: “If you had ever walked into the room and seen how Lorenzo responded to the way my father and Michaela embraced him in life, wrapped him in love, you would see he was a living being who knew he was loved. That’s what they gave him, but it was very difficult.”
Augusto Daniel Odone was born in Rome to Angelo and Maria Odone. His father was a general in the Italian Army, and his mother was a novelist. He grew up in Gamalero, received a law degree from the University of Rome, and studied at the University of Kansas on a Fulbright scholarship.
His first marriage, to Ulla Sjostrom, ended in divorce. His second wife, the former Michaela Murphy, Lorenzo’s mother, died of lung cancer at 61. Besides his daughter, Mr. Odone leaves a son, Francesco, and a granddaughter.