Diagnosed with adrenoleukodystrophy (ALD) as a child:
Lorenzo Odone was born on May 29, 1978 to Michaela and Augusto Odone. By the time he reached school age he began to show symptoms of problems with his nervous system. At age 6, in 1984, he was diagnosed with the childhood cerebral form of adrenoleukodystrophy (ALD)
, a progressive degenerative myelin disorder, meaning that myelin, the "insulation" around nerves, breaks down over time. In Lorenzo's case, the nerves in the brain were gradually being destroyed. Usually boys with this disease become totally disabled in 6 months to 2 years and die sometime after.
Parents begin their search for a cure:
Michaela and Augusto, devastated by Lorenzo's diagnosis, decided to research ALD even though neither had a scientific or medical background. They eventually learned that ALD leaves the body unable to break down big fat molecules, either ones the body makes itself or ones that enter the body through food. After much hard work they helped develop an oil made from olive and rapeseed, which they named "Lorenzo's Oil
." The oil, if started early in boys with ALD but no symptoms, is now known to have some benefit in preventing the form of ALD that Lorenzo had.
Movie "Lorenzo's Oil" based on Lorenzo and his parents:
In 1992 director George Miller turned the story of the Odones and their struggle to find a cure for ALD into the movie, "Lorenzo's Oil
" starring Susan Sarandon and Nick Nolte. Sarandon received an Oscar nomination for Best Actress for her role as Michaela Odone.
Lorenzo's life and disease:
Unfortunately Lorenzo became bedridden and unable to communicate by the time he was 7 years old. Nurses and his parents cared for him 24 hours a day. He was treated with Lorenzo's Oil even though his disease had already progressed. He far outlived his prognosis, surviving to age 30. He died on May 30, 2008, one day after his 30th birthday. Both his father Augusto and his life-long friend Oumouri Hassane were at his side when he passed away. (His mother died of lung cancer in 2002.)
"Lorenzo Odone." The Myelin Project. 04 Mar 2009