His was the moving story of a boy afflicted with a rare and utterly disabling disease, whose parents would not give up in their search for a cure for him.
On Sunday it was announced by his father that Lorenzo Odone, whose condition inspired the film Lorenzo’s Oil — starring Susan Sarandon and Nick Nolte — had died a few days after his 30th birthday and more than two decades after his parents were told he had two years at most to live.
His death at home in Virginia, which came after he contracted pneumonia, has brought to a close an extraordinary, inspirational tale of parents who would not give up hope and a child who refused to stop fighting for life. Lorenzo’s parents, untrained in medicine, undertook their own research to produce a therapy for their son’s genetic disease, adrenoleukodystrophy (ALD).
Augusto and Michaela Odone’s efforts were not enough in the end to reverse their son’s condition, but they did produce a therapy that has brought hope to thousands of other parents confronting the same nightmare.
“It has been in the back of my mind that this could happen for such a long time,” said Lorenzo’s sister, the author and journalist Cristina Odone yesterday. “But it happened incredibly quickly. He had had pneumonia before. But before the ambulance got to my father, he’d gone. He didn’t suffer.”
Odone has been a passionate advocate for the therapy developed by her father and stepmother.
Despite the neurological condition that had immobilized all of his motor functions since childhood, his family had long insisted he was not in a vegetative state but “trapped,” and able to understand what was being told to him.
“You could feel him. He was there. His doctors and nurses all felt it. And he was so serene,” Odone said. “I know it sounds weird, but he was good-natured.”
Lorenzo had been a precociously talented child before the onset of the condition. He was fluent in English, Italian and French, and his favorite stories were from Greek mythology. But the cherubic child was transformed over a few months in 1984. School reports began to express concern about his attention span. At home he suffered mood swings. He began to stumble and have speech problems. One night, when his mother was reading him a bedtime story, Lorenzo, snuggled up beside her and repeatedly begged her to speak louder.
Concerned, his parents took him to a doctor who recommended an immediate brain scan. Lorenzo was diagnosed with ALD.
“The doctors were unanimous,” Cristina has written. “Go home, resign yourselves.”
Lorenzo had only a few more months to live.
ALD is a genetic condition, affecting mainly boys, where the body produces a fatty acid that accumulates in the nerve cells and damages the coating of the nerve fibers, called myelin. A rapid loss of motor functions follows, leading usually to death within two years.
But the Odone family was not prepared to resign itself. Instead, Augusto and Michaela were determined that if medical research had not yet come up with a treatment then they would find one themselves.
The change came rapidly. By the time Cristina returned home to the US to visit the family at the end of 1984, Lorenzo had already lost all his motor functions.
“When I went home from Christmas the extreme change had already taken place. My mother and father had changed too. My father was always a pretty determined character with an iron will; now he had shifted into this obsessive mode. And Michaela too. My father had also changed physically. He’d gone white. I didn’t recognize him. He was so bowed,” Cristina said.
Augusto and Michaela, undeterred by warnings from doctors that without a scientific background the specialist material would be beyond their understanding, devoured every piece of published research on ALD. What was not published they would get from the experts themselves.
Augusto realized that if the body could be persuaded not to produce the rogue acid, then that might be the first step towards a cure, and even lead to regeneration of the damaged nerve endings. The Odones settled on an oil derived from olive and rapeseed, and remarkably, although it did not reverse Lorenzo’s condition as they hoped, boys with the ALD gene given the oil appear to be given a large measure of protection from the condition’s onset.
“We were not prepared to believe that there wasn’t a cure,” recalled Augusto years later.
“What I want to do is to restore functions in Lorenzo,” Augusto said before his son’s death.
And so the search continued. Michaela would read to her son, and play him music, constantly reaching out, convinced that he could hear even if he could barely respond except with a slight, ambiguous movement. But despite the Odones’ apparent breakthrough in isolating a therapy, not everyone in the medical establishment was convinced. Far from it.
Instead, there was widespread resistance to the idea that a couple without a background in medical research could have devised a therapy for a previously untreatable and fatal condition — a skepticism that was redoubled by Hollywood’s treatment of their story in the film Lorenzo’s Oil. The film suggested at its conclusion that they had found a “cure” for ALD, leading even one of their closest allies — Dr Hugo Moser, portrayed by Peter Ustinov in the film — to brand the film an “abomination” for raising unrealistic hopes.
Augusto has said that he understood the reaction of the medical profession.
“In the film they were made to look foolish. They felt challenged by Michaela and I, and what we had done. It was as though I had committed a crime by developing Lorenzo’s oil. Yet it was doctors and scientists who had put us on that track.”
Moser, a leading expert in ALD and director of neurogenetics at Baltimore’s Kennedy Krieger Institute, conducted a 10-year trial with Lorenzo’s oil, which reported in 2005. He followed 104 boys with the ALD gene, all under six years old and symptom-free when the trial began. The results, so far at least, appear dramatic. The boys who were not scrupulously given the oil were nearly three times as likely to develop symptoms as boys who were given the oil without fail.
As Moser put it at the time, Lorenzo’s oil may not be “an absolute preventive” but it certainly “reduces the chances of developing the symptoms.”
That vindication came too late for Michaela, who had died of cancer before the results of Moser’s study were reported. Augusto Odone said last week that he intended to have Lorenzo cremated so his ashes could be mixed with those of his mother who fought so hard to help him.
“There is something of a feeling of relief,” said Cristina. “He outlived so many of us. My aunt. My mother. Dr Moser. There was a terrifying thought. What if he had outlived us all?”
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