Could Lorenzo Odone Talk Could Lorenzo Odone Talk Again
Augusto Odone refused to give upwardly on his son
His remarkable survival is due to his parents' single minded refusal to take the doctors' grim prognosis.
With no scientific training they took on the medical establishment and set about finding a cure. And in 1986 it seemed they had succeeded.
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I asked the md if I could read the medical papers. He said: 'Don't bother, you won't empathise them'. 
The picture show painted a fairytale picture of a phenomenon cure, and gave hope to thousands of immature children suffering the same devastating illness.
Only these claims take always been controversial. At present, as BBC boob tube documentary serial Medical Mysteries reports, a 10 year study into the effects of Lorenzo's Oil has come up up with surprising results.
The oil doesn't seem to work for people who are already ill - simply it does seem to prevent illness in those whose genes make them vulnerable to developing symptoms.
Lorenzo suffered from Adrenoleucodystrophy (ALD), a genetic disease that progressively destroys the brain of young boys.
Within a year children are paralysed, blind, unable to speak. It is invariably fatal.
Desperation
When he was diagnosed, Lorenzo's male parent Augusto was desperate.
"I was terrorised, I was shocked. Well, information technology's a death sentence.
"So I asked the medico if I could read the medical papers. He said: 'Don't bother, you won't understand them'."
Both the Stafford brothers had ALD genes
He discovered that the brain damage seemed to exist linked to a build upward of dangerous fatty acids in the blood - long chain fatty acids.
He invited all the earth experts to a conference to discuss the research, and information technology was at the briefing that he offset found a glimmer of promise.
An oil - oleic acid - was able to destroy these fatty acids.
Less than a year afterwards Augusto and his wife Michaela had a treatment: a combination of oils that effectively reduced the long chain fatty acids in the blood.
Information technology was astonishing. Where the entire medical profession had failed, ii ordinary parents had succeeded.
Optimism
Dr Hugo Moser, the world authority on ALD, remembers that early on optimism.
"Lorenzo's oil lowered the fatty acids more effectively than any other medical arroyo that had been tried. We would exist foolish non to give it very serious consideration."
Augusto published his findings and Dr Moser started putting all of his young ALD patients on the oil.
For one family in Britain, news of the Odones' triumph couldn't take come up at a amend fourth dimension.
The Stafford family had just discovered that their seven-year-erstwhile son Barry had just been diagnosed with ALD.
They flew over to America and Barry became the first British patient to be put on Lorenzo'southward oil.
Within weeks his long chain fatty acid levels had dropped to normal.
Younger brother at risk
But the Staffords anguish wasn't over. Because ALD is a genetic status there was a fifty:50 chance that Barry's younger brother Glenn would take the lacking gene too.
Barry Stafford was the get-go Briton to use the oil
Only a blood test confirmed their worst fears. Glenn too had the faulty cistron.
Alfie Stafford, the boy's father, said: "It felt like our world was turned upside downwardly again. We could lose ii boys. Nosotros could lose 2 boys within x years."
Very little is known near how ALD is inherited. Girls who have the gene practise not show any symptoms, and not every boy with the faulty cistron goes on to develop the devastating childhood form - ALD.
Glenn might non develop ALD, but Dr Moser put him on Lorenzo'due south oil in any issue.
In fact, Glenn became the commencement non-symptomatic child to exist put on the oil.
Reality different
Over the next few years, the movie Lorenzo'due south oil, starring Susan Sarandon and Nick Nolte, was released.
It received huge acclaim, and Susan Sarandon was Oscar nominated for her role as Lorenzo's mother.
It showed a phenomenon cure but the reality was start to look very unlike.
Lorenzo himself was still alive, but was not getting better; and ane past 1, other children on the oil died.
Barry Stafford was getting worse and worse, and his mother Chris was upset at the hype round the film.
"Lovely motion picture - but I did accept a trouble - it made information technology seem like a miracle cure, but information technology's not and I've proved that with Barry, " she said.
Seven years after beingness put on the oil, Barry died. The disease had caused massive brain harm and the oil didn't seem to be able to terminate the progression.
Barry's fate was non unique. Other children were likewise dying, despite being on Lorenzo's oil.
Doctors all over the world stopped prescribing the oil.
Preventative effect
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Dr Moser, nonetheless, was not prepared to requite upwards. He decided to focus on boys who had the ALD cistron but had not yet adult the symptoms.
Possibly the oil could prevent the affliction ever appearing. Boys similar Barry's younger brother Glenn were put on the oil.
Later on 10 years the results are finally through. And they are dramatic.
Of 120 boys in the trial 83 are however complimentary of the affliction. Lorenzo's Oil is showing a significant preventative effect.
According to Dr Moser taking the oil reduced the take a chance of getting the disease by half.
And Glenn Stafford, the first non-symptomatic patient to be out on the oil is now 21 years old and fully fit.
"If they hadn't defenseless the illness and put me on the oil then I don't retrieve I would be here now," he said.
"And so it'southward due to the oil that I'm here now."
So now in that location is existent promise. Tests can identify boys with the gene, and the oil gives them a hugely improved chance of escaping the horrific disease.
And Augusto Odone? He'due south delighted with the findings. Just he's still, 15 years on, looking for a cure for his son who lies at home, paralysed by the ALD.
Medical Mysteries - Lorenzo'southward Oil was broadcast on BBC One on 21 July at 2235 BST.
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Source: http://news.bbc.co.uk/2/hi/health/3907559.stm
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