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Passings : Lorenzo Odone

Inspiration for 'Lorenzo's Oil'

June 01, 2008|From Times Staff and Wire Reports

Lorenzo Odone, 30, whose parents' battle to save him from a nerve disease was depicted in the movie "Lorenzo's Oil," died Friday at his home in Virginia, having lived more than 20 years longer than doctors had predicted.

Odone had come down with aspiration pneumonia recently after getting food stuck in his lungs, said his father, Augusto Odone. He began bleeding heavily and died before an ambulance could reach the family's home in Fairfax County, the elder Odone said.

"He could not see or communicate, but he was still with us," Odone's father said. "He did not suffer. . . . That's the important thing."

Lorenzo Odone was found at age 6 to have adrenoleukodystrophy, or ALD. His doctors told his parents that the disease -- caused by a genetic mutation that causes the neurological system to break down -- would lead to death in two years.

The disease leads to the accumulation of substances called very-long-chain fatty acids in cells, which damage the material that coats nerve fibers in the brain.

Susan Sarandon and Nick Nolte starred as Michaela and Augusto Odone in the 1992 film, which recounted their efforts -- despite lacking scientific backgrounds -- to formulate the oil they said helped their son fight the neurological disease.

A study published in 2005, based on research with 84 boys, showed that a treatment made from olive and rapeseed oils -- patented by Augusto Odone -- can prevent the onset of the disease's symptoms for most boys diagnosed with ALD.

Michaela Odone died in 2000.

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