“Lorenzo’s Oil” Lorenzo Odone Dies at Age 30

He lived just one day past his 30^th birthday.

Lorenzo Michael Murphy Odone, who suffered from adrenoleukodystrophy (ALD), was the subject of a 1992 Oscar-nominated film, Lorenzo’s Oil, starring Nick Nolte and Susan Sarandon as his parents. In real life, Augusto and Michaela Odone gained worldwide attention to the plight of ALD children by searching relentlessly for an effective treatment for the disease.

According to The Myelin Project, Lorenzo died in his sleep at his home in Fairfax, Virginia, on May 30, 2008. Although his mother died of cancer in 2000, his father and his long-time friend, Omouri Hassane, were at his side. He succumbed to pneumonia after food got stuck in his lungs, and he began to bleed.

As a child, Lorenzo was active and very bright. However, by age 7, his condition had deteriorated to the point that his parents realized ALD had stolen his sharp mind, according to USA Today.

Neither of the adult Odones was a scientist. Nevertheless, they managed to develop an eponymous oil they believed would protect other boys from suffering Lorenzo’s fate. While initially dismissed by most of the medical community in the United States, the oil caught the attention of dozens of parents of other ALD boys.

USA Today stated that a 2005 article in the Archives of Neurology described results of a study that validated the effectiveness of the treatment, which was a combination of two fats extracted from olive oil and rapeseed oil. While developing the oil, the Odones discovered that it unfortunately had no effect on boys who already had ALD symptoms.

The 2005 study followed the progress of 89 boys with ALD who ate a low-fat diet and who took Lorenzo’s Oil. Initially, all of them experienced no neurological symptoms and had normal MRI brain scans. Each was selected for screening for ALD because he had a relative who suffered from the disease.

ALD is a genetic condition passed from mothers to sons via the X chromosome. It’s a rare disorder that results in progressive brain damage, failure of the adrenal glands to function and eventual death.

According to USA Today, seven years later, about three fourths of the boys in the study had normal results after neurological exams. Their MRIs were still normal. Lead author Hugo Moser of Johns Hopkins University indicated that while some might never had developed ALD as children, all were at risk for experiencing the milder symptoms of adult disease in their late twenties. Lorenzo Odone far surpassed the average life expectance of boys who inherit the childhood form of the disease.

The Myelin Project was launched in 1989 as the result of the efforts of the Odones and other parents who refused to stand silently by as their sons suffered from ALD. The goal of the project is funding research to locate a cure for demyelinating diseases such as ALD, which are genetic, and for multiple sclerosis, which is not. The headquarters is currently located in Amarillo, Texas on the Texas Tech University Health Sciences Center campus.