Augusto and Michaela Odone
| Augusto Odone | |
|---|---|
| Born | Augusto Daniel Odone March 6, 1933 Rome, Italy |
| Died | October 24, 2013 (aged 80) Acqui Terme, Piedmont, Italy |
| Nationality | Italian |
| Occupation | Economist |
| Known for | Inventor of Lorenzo's oil |
| Michaela Odone | |
|---|---|
| Born | Michaela Teresa Murphy January 10, 1939 Yonkers, New York |
| Died | June 10, 2000 (aged 61) Fairfax, Virginia |
| Nationality | American |
| Lorenzo Odone | |
|---|---|
| Born |
May 29, 1978 Washington, D.C., U.S |
| Died | May 30, 2008 (aged 30) Fairfax, Virginia, U.S |
| Known for | Adrenoleukodystrophy patient |
Augusto Daniel Odone (March 6, 1933 – October 24, 2013) and Michaela Teresa Murphy Odone (January 10, 1939 – June 10, 2000) were the parents of Lorenzo Michael Murphy Odone (May 29, 1978 – May 30, 2008), a child afflicted with the illness adrenoleukodystrophy (ALD). They became famous for developing a controversial treatment using Lorenzo's oil, for their son's incurable illness, and this quest was recounted in the film Lorenzo's Oil (1992). Augusto had previously been an economist for the World Bank.
In recognition of the parents' work, Augusto Odone received an honorary doctorate from the University of Stirling. He continued to raise funds and drive the scientific task force known as The Myelin Project until his death. Michaela Odone battled cancer for some time and died of lung cancer on June 10, 2000, at the age of 61.
Lorenzo died the day after his 30th birthday. He was almost totally paralyzed but was, according to his father Augusto, "holding his own". He was unable to 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". He lived with his father in Virginia and was cared for by nurses and his family friend, Oumouri Hassane.
In mid-2010, two years after Lorenzo's death, Augusto Odone sold his home in Virginia and moved to Acqui Terme in his native Italy, near his father's village of Gamalero where he lived when he was young. He died there on 24 October 2013, at the age of 80, and was survived by the son and daughter from his first marriage, as well as a grandchild by his daughter Cristina Odone.
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.
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