The boy who inspired Lorenzo's Oil

This is a remarkable story, of parents that never gave up on their son, after he was diagnosed with ALD, which is very rare and only affects 1 out of 45.000 people.  There was not very much known about it, and it attracted little money for research. What the doctors did know was that it was fatal and incurable, and that Lorenzo would probably not live more than two more years. His parents, did everything in their power to find a cure for their son.





                                   

                                                                                                 

Mr. Odone and his wife began noticing changes in their son when he was about 4. A high-spirited and precocious boy who spoke three languages, Lorenzo had suddenly begun slurring his speech, stumbling and having temper tantrums at school.

Doctors first ascribed the symptoms to a tropical disease, possibly contracted in Comoros, off the coast of Mozambique, where Mr. Odone had taken his family while working on a project for the bank. They had recently returned to Washington, where the World Bank has its headquarters.

After two years of testing, though, doctors told the Odones that their son had ALD. Because it was so rare, affecting one in 45,000 people, “We were being told to go home and watch Lorenzo die,” Mr. Odone wrote in an essay published in 2011. “We couldn’t and didn’t.”

When he was diagnosed, Lorenzo's father Augusto was desperate.  "I was terrorised, I was shocked. Well, it's a death sentence.  "So I asked the doctor if I could read the medical papers. He said: 'Don't bother, you won't understand them'."

Undeterred, Augusto Odone spent night after night in the library scouring every single paper about his son's illness. He discovered that the brain damage seemed to be linked to a build up of dangerous fatty acids in the blood - long chain fatty acids.

He invited all the world experts to a conference to discuss the research, and it was at the conference that he first found a glimmer of hope.

An oil - oleic acid - was able to destroy these fatty acids.  Less than a year later Augusto and his wife Michaela had a treatment: a combination of oils that effectively reduced the long chain fatty acids in the blood. It was astonishing. Where the entire medical profession had failed, two ordinary parents had succeeded. 

Dr Hugo Moser, the world authority on ALD, remembers that early optimism.  "Lorenzo's oil lowered the fatty acids more effectively than any other medical approach that had been tried. We would be 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 in Britain, news of the Odones' triumph couldn't have come at a better time.

The Stafford family had just discovered that their seven-year-old 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's oil.  Within weeks his long chain fatty acid levels had dropped to normal. 



Over the next few years, the movie Lorenzo's 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 miracle cure but the reality was beginning to look very different.

Lorenzo himself was still alive, but was not getting better; and one by one, 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 film - but I did have a problem - it made it seem like a miracle cure, but it's not and I've proved that with Barry, " she said.

Seven years after being put on the oil, Barry died. The disease had caused massive brain damage and the oil didn't seem to be able to stop the progression.

Barry's fate was not unique. Other children were also dying, despite being on Lorenzo's oil.
Doctors all over the world stopped prescribing the oil.

Augusto Odone turned his formidable drive into another area of research - trying to regenerate the damaged nerves in the brain.

Dr Moser, however, was not prepared to give up. He decided to focus on boys who had the ALD gene but had not yet developed the symptoms.

Perhaps the oil could prevent the disease ever appearing. Boys like Barry's younger brother Glenn were put on the oil. 

From about the age of 8, Lorenzo was paralyzed and blind, unable to speak, dependent on a feeding tube and kept alive by round-the-clock nursing care and the nearly full-time ministrations of his parents. They talked to him constantly and insisted that visitors do likewise, though no one could be certain about his level of awareness. His parents believed that Lorenzo recognized their voices, loved music and enjoyed being alive.

After 10 years the results are finally through. And they are dramatic.

Of 120 boys in the trial 83 are still free of the disease. Lorenzo's Oil is showing a significant preventative effect.

According to Dr Moser taking the oil reduced the 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 caught the disease and put me on the oil then I don't think I would be here now," he said.

"So it's due to the oil that I'm here now."

So now there is real hope. 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's delighted with the findings. But he's still, 15 years on, looking for a cure for his son who lies at home, paralysed by the ALD.

Mr. Odone conceded, mainly in interviews he gave after his wife died in 2000, that he had sometimes wondered if that was enough of a life to justify the extraordinary lengths to which he and his wife had gone.

“Lorenzo never regained his faculties,” said Cristina Odone, one of Mr. Odone’s two children from a previous marriage, in a phone interview. But she added: “If you had ever walked into the room and seen how Lorenzo responded to the way my father and Michaela embraced him in life, wrapped him in love, you would see he was a living being who knew he was loved. That’s what they gave him, but it was very difficult.”

Lorenzo Odone, died of pneumonia in May 2008 at the age of 30, one day after his 30th birthday, having lived 22 years longer than doctors predicted.

Lorenzo's Oil  is a 1992 American drama film directed by George Miller. It is based on the true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy (ALD). The film was nominated for two Academy Awards. It was filmed primarily from September 1991 to February 1992 in Pittsburgh, Pennsylvania. The film had a limited release in North America on December 30, 1992, with a nationwide release two weeks later on January 15, 1993.