|Birth: ||May 29, 1978|
|Death: ||May 30, 2008|
WASHINGTON - The man 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.
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 Friday. "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.
The disease leads to the accumulation of substances called very long chain fatty acids in cells, which damages the material that coats nerve fibers 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 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."
***BIO CORRECTION NOTE***
I was sent an email of Feb. 16, 2011 with the following statement: "Just wanted to correct something about the bio. He did not "bleed" heavily, but "breathed" heavily, as said by Edward Lucas, brother-in-law of Lorenzo as stated here: http://en.wikipedia.org/wiki/Talk:Lorenzo_Odone
It also says here: http://www.ask.com/wiki/Lorenzo_Odone "
Thank you, "knfez8", for sharing this information with us as well as the two links and where the correction information can be obtained.
I also want to thank another person who had notified me earlier this year back in January, but I only just noticed the email while cleaning out my mail box. This is why it's good to check what you're deleting, you just never know what might be of importance. A wise lesson to share with others. Thank you, "srgarnmeister", for your notification as well.
JESUS bless you all for your kindness and prayers for others.
Augusto Odone (1933 - 2013)
Michaela Teresa Murphy Odone (1939 - 2000)
Saint Marys Cemetery
New York, USA
Plot: laid to rest with his mother
Created by: GOD bless you always. N...
Record added: May 31, 2008
Find A Grave Memorial# 27218709