Lorenzo Odone (born May 29 1978) is a person with Adrenoleukodystrophy (ALD), and is notable because of the quest for a treatment by his parents, Augusto and Michaela Odone.

The quest for a treatment

With the limited research available, his father Augusto sparked the invention of Lorenzo's oil, which is the first agent to have shown therapeutic benefit in ALD. His parents' quest for a treatment for Lorenzo was depicted in the film Lorenzo's Oil, and is the subject of the Phil Collins song Lorenzo (on his 1996 album Dance Into the Light).

How Lorenzo is now

Lorenzo is still alive and celebrated his 28th birthday in 2006. He remains almost totally paralyzed but is, according to his father Augusto, "holding his own." Lorenzo cannot see, speak or move on his own. He communicates by wiggling his fingers and blinking his eyes. His mind is intact and he continues to enjoy music and having people read to him. He lives with his father in Virginia and is cared for by nurses and family friend Oumouri Hassane.

Lorenzo's parents

Lorenzo's mother Michaela Odone died from lung cancer in June 2000. His father Augusto Odone continues to organize and support new research into the causes of ALD through the Myelin Project, which he founded.

Sources

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Further reading

1978 births