However, nine years later Hugo Moser , an authority on ALD who had previously been sceptical about the oil, announced that new evidence had convinced him otherwise. If the oil was given to children who were expected to develop the disease, it protected them — though it was not clear whether it would protect them all the way into adulthood.
A follow-up study confirmed the findings. The oil does protect boys if it is given when they are still young and show no symptoms, though it does not help people whose myelin is already damaged. Augusto and Michaela Odone went on to found the Myelin Project , which aims to fund and drive research into myelin diseases. Michaela died in , and Hugo Moser followed in Lorenzo himself was not expected to survive his 10th birthday, but ultimately died the day after his 30th.
Not all members of the scientific community welcomed this approach; or, indeed, their portrayal on film as hard-hearted and arrogant. A backlash against the Odones saw various researchers from around the world denying the efficacy of Lorenzo's oil, and most doctors refused to prescribe it.
In , however, the world's top authority on ALD, the late Dr Hugo Moser, published the findings of a year study which showed that a statistically lower incidence of ALD occurred in those boys whose diet included Lorenzo's oil.
The vindication came too late for Lorenzo's mother, who died of lung cancer in But Augusto, aided by Oumouri Hassane, a family friend from the Comoros who had become Lorenzo's chief carer, continued to keep his son at home.
By now the family had moved to Fairfax, Virginia. In the living room - at the heart of the household - Lorenzo lay on his bed, or was placed on a specially fitted armchair, with a nurse and his father, or Hassane, beside him at all times. He was read to, exercised, and played music to, his every breath and expression constantly monitored. His determination to live on was daily on display: he overcame every cold, fever and even pneumonia.
His courageous battle inspired not only Miller to make his movie, but Phil Collins to write a song, Lorenzo , in ; and schoolchildren from all over the world to write wishing for his recovery. In the end, though, the odds were too high against survival. He had lived more than 20 years longer than doctors had predicted, and was almost certainly the oldest survivor of ALD in the world. Lorenzo is survived by his father Augusto, his brother Francesco, sister Christine, and his friend Oumouri.
Please update your payment details to keep enjoying your Irish Times subscription. Subject of 'Lorenzo's Oil' film dies of pneumonia, aged 30 Sat, Jun 14, , Most Viewed. Watch More Videos. Coronavirus Explore our guides to help you through the pandemic. Latest News. Dublin seeks to ease Brexit tensions as talks resume in London 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.
He had had pneumonia before. But before the ambulance got to my father, he'd gone. He didn't suffer. Despite the neurological condition that had immobilised 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. He was there. His doctors and nurses all felt it.
And he was so serene,' said Odone. Lorenzo had been a precociously talented child before the onset of the condition. He was fluent in English, Italian and French, and his favourite stories were from Greek mythology. But the cherubic child was transformed over a few months in 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. 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 fibres, 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.
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