Augusto and Michaela Odone

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Augusto Odone (born May 4, 1933) and Michaela Teresa Murphy Odone (January 10, 1939 – June 10, 2000) are the parents of Lorenzo Odone (May 29, 1978 – May 30, 2008), 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 recounted in the film Lorenzo's Oil.

In recognition of the parents' work, Augusto Odone has received an honorary doctorate from the University of Stirling. He continues to raise funds and drive the scientific task force known as The Myelin Project. Michaela Odone battled with cancer for some time and passed away in 2000.

Lorenzo died the day after his 30th birthday. He was almost totally paralyzed but was, according to his father Augusto, "holding his own." He couldn't see, speak, or move on his own. He communicated by wiggling his fingers and blinking his eyes. His mind was intact and he enjoyed music and having people read to him. "Certainly, he has good days and bad days, he is bedridden and he cannot eat more than through a tube… but his mind is still there. He likes that we read to him, that we play music for him and he knows who is around him".^[1] He lived with his father in Virginia and was cared for by nurses and his family friend, Oumouri Hassane.

[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 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.^[2]

[edit] References

[edit] Further reading

• Remembering Michaela, an article by Augusto Odone
• The Myelin Project
• Real-Life Sequel to Lorenzo's Oil Describes the death of Hugo Moser, the doctor who worked with the Odones, and his later work to develop a test that would spot ALD in newborn babies.