Background
This severe form of adrenoleukodystrophy was first described by Ernst Siemerling and Hans Gerhard Creutzfeldt in 1923. Lorenzo was diagnosed in 1984, using a new blood test that had been recently developed. People with the disease were usually young boys (5–10 years old), who would gradually become mute, deaf, blind and paralysed before dying, which typically happened within two years due to aspiration or neurological causes.
Augusto and Michaela refused to accept this grim prognosis, and fought to find a treatment for their son's fatal disease, clashing time after time with doctors, specialists, and support groups, some of whom were skeptical that two average citizens could produce a cure. With the help of Hugo Moser, and through long hours of research and study, the Odones, who had had no previous medical background, came up with a treatment. This treatment involved the consumption of a specially prepared oil, which became known as "Lorenzo's oil". Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with 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.
Read more about this topic: Augusto And Michaela Odone
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