Was Lorenzo Odone an inspiration to parents of children with rare diseases?”
Lorenzo Odone was a boy who had adrenoleukodystrophy (ALD). His parents Augusto and Michaela Odone searched for a treatment for his disease and eventually developed a medication they named Lorenzo’s Oil, which is the first treatment that has been shown to limit the destruction of the myelin nerve sheaths that is a part of this disease. There was a film produced about his life in 1992 called Lorenzo’s Oil which starred Nick Nolte and Susan Sarandon. Phil Collins also used one of Lorenzo’s mothers poems to him as the basis for the song Lorenzo, released in 1996. Lorenzo died in 2008 from pneumonia at age 30. His story and his family’s determination to find a treatment have inspired many people, with and without rare diseases.
