The man whose life was the subject of the movie “Lorenzo’s Oil” died on Friday, May 30th at home in Fairfax, Virginia. Lorenzo Odone was 30 years old and spent most of his life fighting for his life from a nerve disease called adrenoleukodystrophy or ALD.
Odone died one day after his 30th birthday, an amazing feat considering doctors did not expect him to live more than two years after his diagnosis. He had recently come down with aspiration pneumonia after getting food stuck in his lungs and bled to death before paramedics could arrive at his house.
Odone’s disease is a degenerative illness in which fatty acid chains in cells accumulate which damage the material that coats nerve fibers in the brain. The neurological system begins to break down until the body can no longer function. Odone was diagnosed with ALD at the age of six. His parents were able to extend his grim fate by 20 years by treating their son with a certain oil made from olives and rapeseeds which helped to slow down the disease’s progress.
Their successes with this treatment inspired the 1992 film “Lorenzo’s Oil” in which Odone’s parents, Augusto and Michaela, were portrayed by Nick Nolte and Susan Sarandon, who won an Academy Award for her performance. While primitive and untested at the time, their treatment has since been proven in a 2005 study to prevent the symptoms of ALD in most boys.
The root of this treatment is to preserve the myelin sheath that surround nerve cells and allow the nerves to conduct impulses between the brain and other parts of the body. Made up of proteins and lipids, the sheath is produced by oligodendroyctes located in the central nervous system. Many nervous diseases, such as multiple sclerosis seek to destroy this myelin sheath. Over two million people suffer from such neurodegenerative disorders.
In 1989, the Odones founded the Myelin Project, a research funding organization which seeks to find a cure for such diseases. One of their initiatives, besides finding a cure for the disease, is to establish a relationship between scientists and families of those who suffer from such illnesses. They also hope to find a way to restore damaged myelin in those who have suffered from these illnesses for long periods and are extensively degenerated.
The Myelin Project resides in Amarillo, Texas and has branches all over the world. This organization is one of many ways that Lorenzo Odone will be honored and remembered. His father also plans to take his son’s ashes to New York to be mixed with his mother’s, who died in 2000 before moving back to Italy. He also plans to write a book to remember his son.
