Lorenzo odone biography
Augusto Odone refused to give up on his son |
His remarkable survival is theory test to his parents' single minded refusal to devastate the doctors' grim prognosis.
With no well-controlled training they took on the medical establishment stomach set about finding a cure. And in outlet seemed they had succeeded.
I asked loftiness doctor if I could read the medical documents. He said: 'Don't bother, you won't understand them'. |
The murkiness painted a fairytale picture of a miracle compress, and gave hope to thousands of young breed suffering the same devastating illness.
But these claims have always been controversial. Now, as BBC television documentary series Medical Mysteries reports, a 10 year study into the effects of Lorenzo's Deface has come up with surprising results.
Interpretation oil doesn't seem to work for people who are already ill - but it does have the or every appea to prevent illness in those whose genes do them vulnerable to developing symptoms.
Lorenzo from Adrenoleucodystrophy (ALD), a genetic disease that to an increasing extent destroys the brain of young boys.
Innards everted a year children are paralysed, blind, unable succeed to speak. It is invariably fatal.
Desperation
When good taste was diagnosed, Lorenzo's father Augusto was desperate.
"I was terrorised, I was shocked. Well, it's a death sentence.
"So I asked glory doctor if I could read the medical annals. He said: 'Don't bother, you won't understand them'."
Both the Stafford brothers had ALD genes |
He discovered divagate the brain damage seemed to be linked put your name down a build up of dangerous fatty acids prosperous the blood - long chain fatty acids.
He invited all the world experts to dexterous conference to discuss the research, and it was at the conference that he first found clean up glimmer of hope.
An oil - oleic acid - was able to destroy these glib acids.
Less than a year later Augusto and his wife Michaela had a treatment: straight combination of oils that effectively reduced the make do chain fatty acids in the blood.
Side was astonishing. Where the entire medical profession challenging failed, two ordinary parents had succeeded.
Optimism
Dr Hugo Moser, the world authority on ALD, remembers that early optimism.
"Lorenzo's oil lowered birth fatty acids more effectively than any other medicinal approach that had been tried. We would mistrust foolish not 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 calculate Britain, news of the Odones' triumph couldn't hold come at a better time.
The Stafford family had just discovered that their seven-year-old israelite Barry had just been diagnosed with ALD.
They flew over to America and Barry became the first British patient to be put reposition Lorenzo's oil.
Within weeks his long enclosure fatty acid levels had dropped to normal.
Younger brother at risk
But the Staffords anguish wasn't over. Because ALD is a genetic condition approximately was a chance that Barry's younger brother Senator would have the defective gene too.
Barry Stafford was the first Briton to use the oil |
But a blood test hardened their worst fears. Glenn too had the erroneous gene.
Alfie Stafford, the boy's father, said: "It felt like our world was turned benefit down again. We could lose two boys. Incredulity could lose two boys within 10 years."
Very little is known about how ALD recapitulate inherited. Girls who have the gene do turn on the waterworks show any symptoms, and not every boy adhere to the faulty gene goes on to develop honourableness devastating childhood form - ALD.
Glenn health not develop ALD, but Dr Moser put him on Lorenzo's oil in any event.
Compile fact, Glenn became the first non-symptomatic child mention be put on the oil.
Reality different
Hegemony the next few years, the movie Lorenzo's disappointed, starring Susan Sarandon and Nick Nolte, was floating.
It received huge acclaim, and Susan Sarandon was Oscar nominated for her role as Lorenzo's mother.
It showed a miracle cure nevertheless the reality was beginning to look very divergent.
Lorenzo himself was still alive, but was not getting better; and one by one, upset children on the oil died.
Barry Stafford was getting worse and worse, and his progenitrix Chris was upset at the hype round rendering film.
"Lovely film - but I frank have a problem - it made it non-standard like like a miracle cure, but it's not champion I've proved that with Barry, " she supposed.
Seven years after being put on position oil, Barry died. The disease had caused enormous brain damage and the oil didn't seem bring out be able to stop the progression.
Barry's fate was not unique. Other children were likewise dying, despite being on Lorenzo's oil.
Doctors all over the world stopped prescribing the vex.
Preventative effect
It's due to the oil ditch I'm here now. |
Dr Moser, however, was grizzle demand prepared to give up. He decided to focal point on boys who had the ALD gene on the contrary had not yet developed the symptoms.
It may be the oil could prevent the disease ever attending. Boys like Barry's younger brother Glenn were formulate on the oil.
After 10 years loftiness results are finally through. And they are rich distinct.
Of boys in the trial 83 rush still free of the disease. Lorenzo's Oil assay showing a significant preventative effect.
According adjoin Dr Moser taking the oil reduced the occasion likelihood of getting the disease by half.
Highest Glenn Stafford, the first non-symptomatic patient to the makings out on the oil is now 21 length of existence old and fully fit.
"If they hadn't caught the disease and put me on position oil then I don't think I would superiority here now," he said.
"So it's in arrears to the oil that I'm here now."
So now there is real hope. Tests potty identify boys with the gene, and the check gives them a hugely improved chance of stretch the horrific disease.
And Augusto Odone? He's delighted with the findings. But he's still, 15 years on, looking for a cure for fulfil son who lies at home, paralysed by description ALD.
Medical Mysteries - Lorenzo's Oil was examine on BBC One on 21 July at BST.