Michaela Murphy Odone (died of cancer in 2000) was the mother of Lorenzo Odone, who has the illness adrenoleukodystrophy (ALD). ALD had only been given its name ten years before, so very little was known about the disease, except that the victims (usually 5 - 10 year old boys) would become mute, deaf, unable to move, and blind, among other horrifying symptoms. Eventually, the patients would die in 2 years time. Michaela and her husband, Augusto, 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 Odones, who had had no previous medical background, came up with a theory to stop the progression of the disease. This theory revolved around the use of 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. She also insisted on continuing to treat her 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.

A poem she wrote about Lorenzo was put to song by Phil Collins, called "Lorenzo," which was featured on his 1996 album, Dance into the Light.

Michaela died in June 2000 from lung cancer. Her husband, Augusto, continues the fight. As a final note, through the making of the movie, Susan Sarandon has become the spokesperson of the Myelin Project.

Further reading

• Remembering Michaela, an article by Augusto Odone
• The Myelin Project

2000 deaths