Lorenzo Odone Ends His Long Battle With Adrenoleukodystophy (Lorenzo Disease) Update: Dalton's Journey Continues ~by Legal Pub

If you are looking for a funny story this Saturday, please look else where. Today's subject deals with a genetic mutation known as Lorenzo's disease. The disease became better known in a movie called "Lorenzo's Oil" which starred Nick Nolte and Suzan Sarandon. The man who was the subject of the movie died Friday at his home in Virginia. Lorenzo Odone lived more than 20 years longer than doctors predicted. Lorenzo Odone was 30 years old.

Lorenzo's father, Augusto Odone, said that Lorenzo had come down with aspiration pneumonia. He began bleeding heavily, and Lorenzo died before an ambulance arrived. According to his dad, Lorenzo, " could not see or communicate, but he was still with us," Odone said Friday. Lorenzo Odone at age 6 was diagnosed to have adrenoleukodystrophy, or ALD. This is caused by a genetic mutation that causes the neurological system to break down. Lorenzo was originally given two years to live. The disease leads to chain fatty acids in cells damaging the membranes that coat nerve fibers in the brain. Augusto developed an oil that helped his son fight the neurological disease. A 2005 study, showed that a treatment made from olive and rapeseed oils (patented by Augusto Odone) may prevent or delay the disease's symptoms for most boys with ALD.

Augusto plans to author a book about his son's battle with the disease.

Update 6-2-08 For those with this genetic mutation, U.S. researchers believe Lorenzo's Oil can prevent the onset of the devastating neurological disease in young boys. Researchers used validated scientific methods to prove the formula works. Researchers found that subsequently, 74 percent of the boys showed no signs of disease progression.

The most dangerous form is a childhood cerebral form. With this form, brain cells are destroyed. Symptoms are devastating and include a loss of the ability to speak, reduced strength and coordination and, eventually, death. At present there is no cure, but potential treatments include cholesterol lowering drugs such as lovastatin and bone marrow transplants.

Dr. Hugo Moser of the Kennedy Krieger Institute in Baltimore was an expert in the field. While Dr. Moser is deceased, his work lives on at the Kennedy Krieger Institute.

Update 3-20-10: Legal Pub was contact on behalf of Dalton, a young boy with this dreaded disease. For anyone interested in reading about Dalton's journey, follow the LINK

Update 11-6-13:  Augusto Odone, the Italian economist who ignored conventional wisdom to invent an experimental medicine that extended the life of his terminally ill son and inspired the film," Lorezo's Oil," died on Friday November 1, 2013 at the age of 80.

Universal Pictures

The 1992 film based on his family story starred Nick Nolte and Susan Sarandon.  While the movie was a hit, Lorenzo’s Oil did not cure Lorenzo Odone, his son, who died in 2008 at age 30.  Adrenoleukodystrophy remains an incurable neurological disease known as ALD. But the moviedid generate financing for research that has confirmed the benefits of Lorenzo’s Oil in some patients.

 

Mr. Odone wrote an essay in 2011 chronicling his journey with the disease and propounding the need to find a cure. A compound using extract of acids in olive and rapeseed oils, became known as Lorenzo’s Oil. It apparently breaks down long-chain fatty acids that are considered a cause of damage to nerve cells in people with ALD.  A 2005 study suggested that Lorenzo’s Oil helped children with ALD if used before they started showing symptoms.  Unfortunately, it was found to be less effective once the degenerative process had begun. The Food and Drug Administration considers Lorenzo Oil "experimental."

Augusto Daniel Odone was born in Rome on March 6, 1933.  He grew up in Gamalero, Italy and received a law degree from the University of Rome.  The world was a better place because he shared his passion with humanity.