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Tuesday, 6 March 2018

Augusto Odone – medical pioneer


Father who invented ‘Lorenzo’s Oil’ for sick son


Augusto Odone devoted his life to caring for his stricken son Lorenzo
Augusto Odone devoted his life to caring
for his stricken son Lorenzo
Augusto Odone, the father who invented a medicine to treat his incurably ill son despite having no medical training, was born on this day in 1933 in Rome.

Odone’s son, Lorenzo, was diagnosed with the rare metabolic condition ALD (Adrenoleukodystrophy) at the age of six. Augusto and his American-born wife, Michaela, were told that little could be done and that Lorenzo would suffer from increasing paralysis and probably die within two years.

Refusing simply to do nothing, the Odones, who lived in Washington, where Augusto was an economist working for the World Bank, threw themselves into discovering everything that was known about the condition and the biochemistry of the nervous system, contacting every doctor, biologist and researcher they could find who had researched the condition and assembled them for a symposium.

Drawing on this pooled knowledge, and with the help of Hugo Moser, a Swiss-born professor of neurology at Johns Hopkins University in Baltimore, they eventually came up with the idea of combining extracts of olive oil and rapeseed oil in a medicine that would break down the long-chain fatty acids in the human body that were considered a major cause of the nerve damage suffered by people with ALD.

The medicine, which seemed to slow the progression of Lorenzo’s disease, soon became known as Lorenzo’s Oil. Against all odds, Lorenzo survived until the day after his 30th birthday, having lived more than 20 years beyond his doctors’ gloomy forecasts.

Lorenzo (left), with his father, lived for 22 years longer  than doctors predicted after his diagnosis
Lorenzo (left), with his father, lived for 22 years longer
 than doctors predicted after his diagnosis
The Odones, moreover, were convinced that Lorenzo drew some pleasure from being alive. He showed signs that he enjoyed music and listening to stories and responded to voices, even though for the last 22 years of his life he was paralysed, blind and unable to speak, could only be fed through a tube and required round-the-clock nursing care. He communicated by blinking and wiggling his fingers.

Their story attracted attention all over the world.  It became the subject of a film, entitled Lorenzo’s Oil, directed by George Miller and starring Nick Nolte and Susan Sarandon, that was a box office hit and was nominated for two Academy Awards.

The movie attracted criticism from medical experts for portraying scientists as unfeeling, although the Odones had been outspoken in their comments about the response of the medical establishment to their attempts to find a treatment.

Doctors also criticised the film for suggesting that Lorenzo’s Oil was a cure for ALD, although the medicine is still used today and has been shown to delay the onset of symptoms if prescribed before they develop.

Lorenzo seemed a normal child until the age of four
Lorenzo seemed a normal
child until the age of four
Augusto Odone, whose mother was a novelist and his father a general in the Italian army, grew up in Gamalero, a village in Piedmont, not far from Alessandria.  He was educated at the University of Rome before attending the University of Kansas on a scholarship.  He joined the World Bank in 1969.

He devoted much of his life to raising money for research before deciding in 2010, two years after Lorenzo’s death, to move back to Italy, settling in Acqui Terme, about 20km (12 miles) from Gamalero.  He died there in 2013, aged 80, having survived Michaela, his second wife, by 13 years.

His daughter by his first marriage is the Kenyan-born English journalist and novelist, Christina Odone.

La Bollente in Acqui Terme
La Bollente in Acqui Terme
Travel tip:

Acqui Terme in Piedmont, which is situated about 100km (62 miles) southeast of Turin, is a town of just over 20,000 people best known for the local wine, Brachetto d’Acqui, and for the hot sulphur springs that were discovered during the Roman era, which bubble up at a temperature of 75 degrees Celsius, emerging at a site in the centre of the town where a small pavilion, called La Bollente, was built in 1870.

Travel tip:

Alessandria, a city of 94,000 people about equidistant from Turin and Milan, is notable for the Cittadella, the 18th century star fort across the Tanaro river from the city, which is one of the best preserved fortifications of that era, with the outer wall and defensive towers still intact.  It is also home to a military museum that contains more than 1500 uniforms, weapons and other memorabilia from the Italian Army.

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