"People will say, 'How come Lorenzo's still alive; he should have died 18 years ago,'" says Augusto Odone.
Lorenzo Odone was an active, talkative child until the age of 6 when he was struck by adrenoleukodystrophy (ALD), a disease that leads to neurological deteriorations similar to those caused by a severe stroke.
It affects mostly boys, and there is no cure for it. Most children die within a decade of their diagnosis. Lorenzo is 24, and though unable to move or speak, he's in relatively good health.
"I attribute that partly to Lorenzo's Oil and part to the assiduous care he had," says Augusto.
In the late 1980s, in a desperate search to help his son, the former Italian World Bank economist began to learn medicine and biochemistry.
ALD causes the breakdown of myelin, the fatty substance that acts as insulating material around nerve fibers. Gradually, the nerves can no longer transmit messages, and movement and speech stop.
To combat that, Augusto created a mixture of olive and rapeseed oils that, he believed, delayed the build-up of the fatty acids thought to contribute to the breakdown of the nerve coating. He named his oil after his son.
In 1992, the movie "Lorenzo's Oil" brought attention to the disease and the oil.
While it may have given the public the impression that Lorenzo's oil was a cure, the medical establishment was skeptical.
Now the results of a 10-year study recently concluded that Lorenzo's Oil therapy in children with early-stage ALD reduced their chances of developing nerve damage by a whopping 70 percent. But the same study also concluded the oil does not cure the disease.
"It is not an absolute, it is part of an overall treatment program," says Dr. Hugo Moser, a research scientist and director of the Neurogenetics Research Center at the Kennedy Krieger Institute. "It improves our overall capacity to treat the disease. It clearly, by itself, is not the answer."
Still, Augusto believes it makes a big difference in his son's health.
He bears much of the burden for Lorenzo's care. Two years ago, his wife Michaela died, worn down, he says, by the strain of caring for her son for 18 hours a day.
"My wife was a wonderful mother. [She] was a tiger mother," says Augusto.
Augusto is still searching for a cure, exploring ways to actually reverse the crippling deterioration of myelin around nerves.
"Myelin is essential for the brain to conduct impulses to other parts of the body and to receive impulses," says Augusto. "If our efforts are successful, then Lorenzo might re-acquire some functions."
For now, the father and son communicate to each other in their own special language.