Augusto Odone - Telegraph The prevailing medical wisdom decreed that children with ALD typically lived for only a few years beyond diagnosis, and the Odones were told that their son had only two years left. But they refused to accept this bleak prognosis and embarked on an exhaustive quest for an effective treatment. Despite having no medical training, Augusto studied medicine and biochemistry, and the connection between brain damage and a build-up of what are called long-chain fatty acids in the blood. He arranged a conference which threw up an important piece of information: that animals fed olive oil seemed to have lowered levels of very long-chain fatty acids. The effect seemed to come from a component of olive oil known as oleic acid. In the light of this, Augusto developed an oil which combined erucic acid and oleic acid derived from olive and rapeseed oils. To help with the oil's development, he enlisted a British scientist, Don Suddaby, who agreed to come out of retirement to help produce an edible extract of these oils, finally sending the Odones a bottle of what would become known as "Lorenzo's oil"." Augusto Odone with a bottle of Lorenzo's Oil (CAMERA PRESS) Despite the scepticism of the medical profession, Augusto Odone patented the oil. Subsequently a study published in 2005, based on research with 84 boys, demonstrated its efficacy in preventing the onset of symptoms for a majority of boys diagnosed early with ALD. In 1989 the Odones founded a charity called the Myelin Project, an international scientific body which seeks to promote research into diseases which destroy myelin, including ALD and the more common multiple sclerosis. This discovery of the preventive value of the oil came too late for Lorenzo, who was already suffering from the irreversible neurological effects of the disease. By 1987 he had become bedridden; he was blind, deaf and almost completely disabled physically. None the less, Augusto Odone believed that the treatment was responsible for giving Lorenzo many extra years of life. Augusto had been granted leave by his employers, the World Bank, to work from the family home outside Washington so that he could help to care for his son, and for more than 20 years he dedicated himself to keeping Lorenzo alive. Rather than relegate their son to an upstairs bedroom, the Odones moved to a bungalow, setting up his bed and the equipment he needed in their main living room. They devoted themselves to his care, dressing him for the day and undressing him at night in an attempt to replicate the normal routines of life. His condition required round-the-clock medical care. He was attended by five nurses working in shifts, as well as by his parents. Because he was unable to swallow saliva, he had to be suctioned, sometimes every few minutes. Every bodily function had to be monitored, and he had to be fed five times a day through a tube. To casual visitors, Lorenzo seemed completely unresponsive. Augusto recalled: "Over the years, people have said to me, 'Augusto, you are crazy with this obsession. The kid was going to die. Why make him suffer? But to say that implies that Lorenzo had gone, that what was left was a shell, a void, a living, breathing void. But Lorenzo was still with us. He enjoyed being read to, listening to music. It is so complex, but I do believe that."" Susan Sarandon, Nick Nolte and Zack O'Malley Greenburg (as Lorenzo) in 'Lorenzo's Oil' (ALAMY) After his wife's death in 2000, Augusto was helped by an old family friend called Oumouri, whom the Odones had met during their time in the Comoros Islands. He insisted that when he played his son tapes of his mother's voice, which she had recorded for him before her death, he would respond with conscious and voluntary sounds. Lorenzo eventually died from complications of pneumonia in 2008, one day after his 30th birthday. The circumstances of his death were deeply traumatic for his father, who had realised something was wrong, but delayed calling an ambulance until it was too late."I am very suspicious of doctors in general," he explained. Every time we brought Lorenzo to a hospital, he would get so many other diseases. The infection to which Lorenzo succumbed was possibly caused by a stray food particle that entered his windpipe. "I loved him so much, but at the end I screwed up, in the sense I didn't call the ambulance in time," Augusto said. Yet it is a telling testament to his father's love that, during all his years of illness, Lorenzo never developed a single bedsore and, until his death, had never suffered from pneumonia, which is common among ALD patients. Augusto Odone was born in Rome on March 6 1933 and brought up at the village of Gamalero, near Acqui Terme in the Piedmont region of Italy. In 1969 he went to Washington to work as an economist for the World Bank and in 1978, he and his second wife, Michaela, had Lorenzo, who was named after Gamalero's patron saint. The World Bank posted Augusto to the Comoros, off the east coast of Africa, where, aged three, Lorenzo instantly picked up French. When Lorenzo was five they returned to the Washington area. After Lorenzo's death, Augusto returned to Acqui Terme to be nearer his surviving children and grandchild. "I try to make a future for myself, for them," he explained. But Lorenzo is always near me too. I don't know if I think he is in heaven, or at peace, or in the atmosphere around me. What I do know is that I dream about him often. Sometimes he is in his sick bed, but often he is a small boy of three and four, running and swimming like any other child. Augusto Odone is survived by the son and daughter of his first marriage to Ulla Sjostrom. His daughter is the writer, commentator and former editor of The Catholic Herald, Cristina Odone. Augusto Odone, born March 6 1933, died October 24 2013