Lorenzo’s oil revisited

In 1992 I watched the film Lorenzo’s Oil and found it moving and encouraging. Last night I watched it again and found it to be an astonishing piece of filmmaking. The sheer will and spirit of Lorenzo’s parents up against pretty much everyone has got to leave you feeling empowered.

For those of you who havent seen the film 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). Failing to find a doctor capable of treating their young son Lorenzo’s rare disease, Augusto and Michaela Odone sought their own cure. They set out on a mission to find a treatment to save their child. In their quest, the Odones clashed with doctors, scientists, and support groups, who were skeptical that anything could be done about ALD, much less by laypeople. But they persisted, setting up camp in medical libraries, reviewing animal experiments, badgering researchers, questioning top doctors all over the world, and even organizing an international symposium.

Lorenzo’s oil is a 4:1 mixture of glycerol trioleate and glycerol trierucate (the triglyceride forms of oleic and erucic acid), prepared from olive oil and rapeseed oil. It is used in the investigational treatment of asymptomatic patients of adrenoleukodystrophy (ALD). Augusto received U.S. Patent No. 5,331,009 for the oil. The royalties he now receives are paid to the Myelin Project which he and Michaela founded to further research treatments for ALD and similar disorders.

Sadly, Lorenzo Odone died on May 30, 2008, after suffering from aspiration pneumonia caused by food getting stuck in his lungs, but survived 20 years more than expected.

If there is anything to be taken from the film it is this. The will to survive can be greater than anyone can anticipate and it doesn’t matter what cures your ailment, a conventional or alternative approach, just as long as it does work.

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