Lorenzo Odone subject of ‘Lorenzo's Oil' dies at age of 30

Subject of ‘Lorenzo's Oil' dies at age of 30

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

Lorenzo Odone, who doctors had predicted would die in childhood, died one day after his 30th birthday, said his father, Augusto Odone. Lorenzo Odone had come down with aspiration pneumonia recently after getting food stuck in his lungs, his father said. He began bleeding heavily, and before an ambulance reached their home his son was dead, Odone said. "He could not see or communicate, but he was still with us," Odone said. "He did not suffer. ... That's the important thing." Odone was found at age 6 to have adrenoleukodystrophy, or ALD. His doctors told his parents the disease -- caused by a genetic mutation that causes the neurological system to break down -- would lead to death in two years.

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 onset of the disease's symptoms for most boys who receive an ALD diagnosis.

Odone plans to take his son's ashes to New York to mix them with those of his wife, who died in 2000. Then, Odone said, he will sell his home in Fairfax, Va., and move back to his native Italy.

Odone also plans to write a book memorializing his son, "to tell the story of Lorenzo as a way to make him live on."