Augusto Odone and wife Michaela, (pictured above) refused to accept the fatal diagnosis of their son, Lorenzo (second photo). Despite having no medical knowledge or experience, they rolled up their sleeves and researched night and day to find a cure for their dying son, afflicted with ALD. Through dogged determination, they were successful when they developed a cure that stopped the progression of ALD. This cure has saved thousands of children over the years. Both parents received honorary medical degrees from University's across the country for their discovery.
PARENTS WITH NO MEDICAL KNOWLEDGE CREATE CURE FOR DYING SON & OTHER KIDS:
Augusto Odone and wife Michaela Teresa Murphy Odone are the parents of Lorenzo Odone (b. 1978), a child afflicted with the illness adrenoleukodystrophy (ALD). They became famous for discovering a treatment for their son's "incurable" illness, and this quest was immortalized in the film "Lorenzo's Oil."
Lorenzo Odone, at five years old, was an intelligent and lively child. He had command of three languages and had spent three years of his life in the Comoros Islands in East Africa. In December of 1983, five months before his sixth birthday his behavior began to change. At school he became disruptive and began to throw tantrums for apparently no reason at all. Concerned, Lorenzo's teachers notified his parents, Augusto and Michaela Odone. They then had Lorenzo tested for a variety of things, including psychological and neurological explanations. Finally, Easter weekend of 1984, one month before his sixth birthday, the Washington Children's Hospital gave a diagnosis.
Lorenzo had a rare disease known as Adrenoleukodystrophy or ALD.
At the time of Lorenzo's diagnosis, ALD was a recently-identified disease, that had only been named ten years earlier. Very little was known about it at that time, except that the victims were usually young (5-10 years old) boys, who would gradually become mute, deaf, unable to move, and blind, among other horrifying symptoms, typically including death within two years.
Augusto and Michaela refused to accept the hopelessness afforded to them, and fought to find a treatment for their son's potentially fatal disease, clashing time after time with stubborn doctors, skeptical specialists, and unhelpful support groups. Through long hours of research and study, the Odone's, who had had no previous medical background, came up with a treatment to stop the progression of the disease. This treatment revolved around the consumption of a specially-prepared oil, which became known as "Lorenzo's oil."
The Odone's had an important role both in developing Lorenzo's oil and in setting up the Myelin Project, which promotes and carries out research on ALD and other similar disorders. Michaela also insisted on continuing to treat her incapacitated son as a human being and not a 'vegetable.' Eventually, their story was made into the 1992 film "Lorenzo's Oil," with Augusto being played by Nick Nolte and Michaela being played by Susan Sarandon, who through her involvement with the movie became the spokesperson of the Myelin Project.
A poem Michaela wrote about Lorenzo was also put to song by Phil Collins. Called "Lorenzo," it was featured on his 1996 album, Dance into the Light.
Augusto currently continues to work as an activist, but Michaela died in June 2000 from lung cancer.
As of 2006, Lorenzo is still alive and celebrated his 28th birthday. He remains almost totally paralyzed but is, according to his father, Augusto, "holding his own." Lorenzo cannot see, speak or move on his own. He communicates by wiggling his fingers and blinking his eyes. His mind is intact and he continues to enjoy music and having people read to him. He lives with his father in Virginia and is cared for by nurses and family friend, Oumouri Hassane.
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