'Lorenzo's Oil' boy dies at 302nd June 2008
Lorenzo Odone, about whom the 1992 movie "Lorenzo's Oil" was made, has died at the age of 30 from pneumonia.
Lorenzo, whose parents' fight to save him from adrenoleukodystrophy (ALD) was dramatised by director George Miller, died of aspiration pneumonia in the US state of Virginia on Friday - a day after his 30th birthday. The pneumonia had been caused by food stuck in his lungs.
Told by doctors that their son would not live beyond the age of eight, Augusto and Michaela Odone set out on a mission to find a treatment and save their child.
The couple were faced with scepticism from the medical profession, but their persistence led them to review medical literature, beg for collaboration from researchers and organise an international symposium about ALD.
Finally, they hit on a therapy which involved adding a specially modified version of olive oil to Lorenzo's diet, which had an impact on the build up of very long chain fatty acids in the brain which characterises the disease.
Plenty of neurological damage had already been done, however, and Lorenzo was only able to communicate through sign language.
Augusto Odone was awarded an honorary doctorate from the University of Stirling.
Augusto Odone said Lorenzo could not see or communicate, but he was still conscious at the end, and did not suffer. The boy's ashes will be taken to New York and placed with those of his mother Michaela, who died in 2000.
Lorenzo's story gave rare publicity to ALD, a genetic disease that progressively destroys the brains of young boys.
A year after the build up of dangerous fatty acids - long-chain fatty acids - in the blood, children are paralysed, blind, and unable to speak.
Despite the happy ending claimed in the movie, in which Augusto and Michaela were played by Nick Nolte and Susan Sarandon, claims that the modified oil treatment works have always been controversial.
Children suffering from ALD continued to die, despite being treated with Lorenzo's oil, although studies have shown it can prevent genetically susceptible children from developing the disease in the first place.
Michael Odone said he now planned to move back to his native Italy and write a book about Lorenzo, who was played in the film by Zack O'Malley Greenburg.
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