LORENZO ODONELorenzo Odone, whose parents' fight to save him from a rare nerve disorder was chronicled in the film Lorenzo's Oil, died on 30 May, 2008 - a day after his 30th birthday.
But in reaching that milestone 30th birthday he defied the expectations of doctors who thought he would survive a couple of years at best after he was diagnosed with Adrenoleukodystrophy (ALD) in 1984, at the age of 6.
Mr Odone's parents, Augusto and Michaela, despite having no scientific or medical background, decided to research the rare genetic condition. They experimented with various substances to try to develop something which would stop the disease in its tracks and eventually came up with a blend of acids from olive and rapeseed oils.
Their story caught the attention of film director George Miller, who went on to make Happy Feet and The Witches of Eastwick. He turned the story into the 1992 film Lorenzo's Oil. Actors Susan Sarandon and Nick Nolte played Michaela and Augusto. Lorenzo was played by Zack O'Malley Greenburg. Susan Sarandon was nominated for an Oscar for her role and insisted on taking Michaela Odone with her to the Oscar ceremony.
Lorenzo Michael Murphy Odone was born on 29 May, 1978, and for the first five and a half years of his life he was a healthy, active boy who spoke three languages. He lived in the Comoros Islands in East Africa for three years with his parents.
When Lorenzo was five, his teachers noticed behavioural changes and alerted his family. Soon afterwards Lorenzo was diagnosed with ALD.
At the time this was a comparatively recently-recognised condition. It had only been named 10 years earlier. Little was known about it except that the victims were usually boys aged between five and 10, who would gradually become mute, deaf, unable to move, and blind. It is invariably fatal.
The disease leads to the build up of dangerous fatty acids - long-chain fatty acids - in the blood. The combination of oils his parents put together effectively reduced the long-chain fatty acids in the blood.
Despite the fairytale ending in the film, the claims of a cure have always been controversial and children suffering from ALD continued to die, despite being treated with Lorenzo's oil.
However, a 10-year study published in 2005 said that the oil might delay or even prevent the disease in boys in which it had not yet caused symptoms. Mr and Mrs Odone founded the Myelin Project to continue to research ALD and other similar disorders.
Bedridden and unable to communicate from his seventh year, Lorenzo was kept at home by his parents. Nurses cared for him round the clock, as did his parents.
In 1996, Phil Collins wrote the song Lorenzo, based on lyrics written by Mrs Odone.
Mrs Odone helped her son devise a means of communicating with her and others through the blinking of his eyes and the wiggling of his fingers.
Mrs Odone died of cancer in 2002.
Shortly before his son's death, Mr Odone senior said that Lorenzo's mind was intact and he enjoyed music and having people read to him.
"Certainly, he has good days and bad days, he is bedridden and he cannot eat more than through a tube… but his mind is still there. He likes that we read to him, that we play music for him and he knows who is around him."
Lorenzo Odone died at his home in Virginia, USA. He had fallen ill with aspiration pneumonia after getting food stuck in his throat, said his father.
He was survived by his father, his brother Francesco and sister Cristina.
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