Augusto Odone, a former World Bank economist whose battle to save his son's life was depicted in the Hollywood movie Lorenzo's Oil, has died at the age of 80.
Augusto Odone, a former World Bank economist whose battle to save his son's life was depicted in the Hollywood movie Lorenzo's Oil, has died at the age of 80.
His daughter Cristina Odone says her father died after suffering organ failure precipitated by a lung infection.
The Italian, who defied scientists to invent a treatment to save his son Lorenzo, was played by Nick Nolte in the big screen adaptation.
Lorenzo was diagnosed with adrenoleukodystrophy, a neurological disease, when he was six. Doctors predicted he would die in childhood but Mr Odone and his wife Michaela relentlessly sought treatment.
Mr Odone taught himself enough science to formulate a concoction derived from natural cooking oils for Lorenzo. Studies later suggested the oil appears to delay symptoms.
Lorenzo died in 2008 at the age of 30. Lorenzo had astonished doctors by surviving decades longer than they predicted.
Cristina Odone said her father died in Acqui Terme, a town in north-western Italy in the area where he grew up. She said he had lived for many years with a series of medical problems.
"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 when he was living in the Washington DC area, and Mr Odone took early retirement and began work.
After scouring medical journals and consulting scientists and doctors, he turned to a British scientist to produce an edible version of his concoction, 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 fibres. It is characterised by the build-up 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's parents had cared for him at home as he became paralysed and lost the ability to talk, needing 24-hour care.
After his son's death, Mr Odone returned to 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".
Mr Odone is survived by Cristina and son Francesco.
