Augusto and Michaela Odone

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Augusto Odone (born c. 1933 [1]) and Michaela Teresa Murphy Odone (January 10, 1939-June 10, 2000) 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.

[edit] Background

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 doctors, specialists, and support groups, all of whom were skeptical that only two average citizens could produce such a cure. Despite this, they persisted, and through long hours of research and study, the Odones, 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 Odones 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', helping him devise a means of communicating with her and others through the blinking of his eyes and the wiggling of his fingers. 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.

[edit] Current status

Augusto currently continues to work as an activist, but Michaela died in June 2000 from lung cancer. Lorenzo, as of 2006, is still living, though requires constant care. According to Augusto, Lorenzo is "holding his own."

By a first marriage made prior to his marrying Michaela, Augusto is also the father of journalist Cristina Odone and Francesco Odone.