Lorenzo Odone, brother of the former Catholic Herald editor, Cristina Odone, dies at the age of 30 from an illness doctors predicted would kill him as a child
BY DAVID V BARRETT
LORENZO ODONE, whose story of survival against all odds inspired a film, died last week one day after his 30th birthday.
Doctors said that he had two more years to live when he was six years old. Augusto and Michaela Odone refused to accept this. With no scientific knowledge they started researching their son's disease and searching for a cure.
Lorenzo had suffered from adreno-leukodystrophy (ALD), a genetic disorder that causes the neurological system to break down. Before he was stricken with the disease Lorenzo was "a remarkable boy, a funny and articulate child who spoke English, Italian and French and favoured opera over nursery rhymes", said his halfsister, the former Catholic Herald editor Cristina Odone.
When he started having hearing and speech difficulties, and displaying clumsiness, his parents had tests carried out, including brain scans. Lorenzo's hearing and sight began to deteriorate rapidly. Specialists diagnosed ALD and told his parents that there was no cure.
ALD creates long-chain fatty acids which the body is unable to break down. They accumulate in nerve cells and cause damage to the myelin sheath, the coating of nerve endings that allows transmission of signals between the brain and all parts of the body.
Sight, hearing and all bodily movement, including the ability to swallow, fail. Lorenzo needed to be permanently on a suction machine so that he would not choke on his saliva.
His parents were encouraged to put their son in a home where he could be looked after by professionals. Instead they moved his bed into the living room of their Virginia home so that he was constantly at the heart of their everyday life. Although he could not respond, his parents included him in their conversation, read to him and played him music.
Lorenzo's parents were Catholic, but initially his mother "grew away from the Church for a period because she was so angry at what had happened", Miss Odone told The Catholic Herald. But then she came back to her faith, and would read prayers to Lorenzo.
Augusto and Michaela Odone studied everything that had been published on Lorenzo's disease and searched for the solution that the medical profession said did not exist. "They locked themselves up in the National Institute of Health, which has a huge library. They pored over huge numbers of documents which would have made most doctors go crosseyed," said Miss Odone.
Eventually they discovered research that showed that erucic acid from rapeseed oil was able to break down very long-chain fatty acids, but it was not being used because it was thought to be poisonous.
"My father's great leap was to consider it not poisonous and then to have it manufactured," she said. Augusto Odone found a company in Hull that was prepared to manufacture what he called Lorenzo's Oil, a mixture of erucic acid with oleic acid from olive oil, made to his exact specification, which he patented. Lorenzo's parents hoped that this would reverse the effects of the disease in their son and cure him.
of•the disease as an attack. The attacks on Lorenzo stopped, but it was a therapy, not a cure, so it didn't reverse the disease," said Miss Odone. But it did stop it getting any worse.
Initially the medical profession was reluctant to give any credence to the work of two amateurs, but their persistence eventually convinced some scientists to look at their work.
One, Dr Hugo Moser, an expert in ALD and director of neurogenetics at Baltimore's Kennedy Krieger Institute, conducted a 10-year trial on around 80 boys with the gene that causes ALD.
When they began the trial none of the boys, all then under six years old, had begun to show symptoms of the disease. The trial, published in 2005, found that boys given the oil regularly were significantly less likely to develop the symptoms of the disease.
This was vindication for Lorenzo's father, but his mother did not live to see it; she had died of lung cancer in 2000.
The story of Lorenzo and his parents' struggle to find a cure for his disease was filmed in 2002 as Lorenzo's Oil, with Zack O'Malley Greenburg as Lorenzo. Susan Sarandon as his mother and Nick Nolte as his father; Peter Ustinov played Professor Nikolais, based on Dr Moser. Although the film had several award nominations it was heavily criticised by the medical profession, including the Odones' strongest supporter Dr Moser, for raising false hopes of a cure for the disease, "The film had to have an upbeat ending, that Lorenzo was able to talk again," said Cristina Odone. "This was not true."
She described being with her half-brother. He was unable to move, but the expression on his face told her that he knew she was there. "It was a feeling of his spirit being conscious of you," she said.
Lorenzo died of aspiration pneumonia after food became stuck in his lungs; by the time an ambulance arrived he was dead. His father said that he did not suffer.
He plans to have his son's ashes mixed with those of his mother, at her wish; then, having spent over two decades caring for him, he intends to write a book about his son. so that he will Live on through his story.