Category: News and Views
Associated Press / May 31, 2008
WASHINGTON - 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.
Lorenzo Odone, who doctors had predicted would not live past childhood, died one day after his 30th birthday, said his father, Augusto. Lorenzo Odone became
infected with aspiration pneumonia recently after getting food stuck in his lungs, his father said.
Mr. 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 disease, despite lacking scientific backgrounds. Sarandon earned an Academy Award nomination.
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 move back to his native
Italy.
OK, my turn to say wow. Amazing stuff. Medicine, though it does it's best, is not always an exact science, and it's great when it can be proven wrong like that. Even for the doctors too, I shouldn't wonder. May he rest well.
awwe that por man, he's lost his wife and his son now, that's fantastic that he was able to have his son for as long as he did inspite of the dr's predictions.
Yes, an inspiring story. Phil Collins wrote music to a song co-written by Lorenzo's mother about his life. The lyrics are below.
Once upon a time I made a lion roar -
He was sleeping in the sunbeams on the old zoo floor.
I had gone to see the park where my papa used to play,
Its called called villa borghese and its on the way
To east africa.
Down on grand comoro island, where I grew past four,
I could swim and fish and snorkel on the ocean floor,
And the wind laughed, and the wind laughed through the trees as if to say,
Heres a child wholl want the world to go his way
In east africa, in east africa.
Suddenly for me the world turned upside down -
Far from my friends the lions and the dolphins came this awful sound.
Dark shadows, sounds of thunder raging over me,
Came this monster called a-dre-no-leu-ko-dys-tro-phy
Wheres my east africa?
Well they said, they said, they said (the ones who know it all)
They said from now on for you there will be no more standing tall,
So I took my parents hands, I lifted my head to say
Ill just have to be a hero, theres no other way!
Back to east africa
Back to east africa
Back to east africa
Come with me Im going back, going back to east africa.
http://uk.youtube.com/watch?v=fi2uN96UJuc