For some reason, it attracted me, I got immersed in watching it whenever the show was broadcast over network television.
The doctors said that Lorenzo Odone, at the time of diagnosis, could only last for another two years, but he managed to hold on until he reached 30 two days ago. Then he was dead, one day after that. The boy remain incapacitated, unable to walk or talk but could eat and blink. But the syndrome he had is the opposite and more severe than Jean-Dominque Bauby's. Bauby could think but could not convey his speech.
A tip to the hat for this incredible man (R.I.P) who fought that long to inspire Project Myelin.
WASHINGTON, May 31 — The man whose parents' battle to save him from a nerve disease was told in the movie "Lorenzo's Oil" died yesterday 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, Augusto said.
"He could not see or communicate, but he was still with us," Augusto said yesterday. "He did not suffer. ... That's the important thing."
Lorenzo 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.
The disease leads to the accumulation of substances called very long chain fatty acids in cells, which damages the material that coats nerve fibres in the brain.
Susan Sarandon and Nick Nolte starred as Michaela and Augusto Odone in 1992's "Lorenzo's Oil," which recounted their efforts to formulate the oil they said helped their son fight the neurological disease, despite lacking scientific backgrounds.
Sarandon earned an Academy Award nomination for her performance.
A study published in 2005, based on research with 84 boys, showed that a treatment made from olive and rapeseed oils — patented by Augusto — can prevent onset of the disease's symptoms for most boys who receive an ALD diagnosis.
Augusto 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, Virginia, and move back to his native Italy.
Augusto also plans to write a book memorialising his son, "to tell the story of Lorenzo as a way to make him live on." — AP