Lorenzos Oil real life inspiration dies


Lorenzo Odone, the child featured in the film Lorenzo’s Oil has died. I have always wondered what happened to this boy, even though it must have been ten years since I saw the film. I thought, after reading several times that the film gave false hope to the parents of Adrenoleucodystrophy (ALD) sufferers, that Lorenzo must have died soon after the film was made in 1992.

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. When Lorenzo’s parents, Augusto and Michaela Odone, were told of this prognosis they researched until they came up with Lorenzo’s Oil, which stopped the progress of the disease but did not reverse the brain damage. Augusto and Michaela (until her death in 2000) continued to research for a cure and care for Lorenzo until his death late last month. They had no medical training.

Lorenzo died of pneumonia on May 30 at age 30.

While the film and Lorenzo’s parents were accused of giving false hope, some studies have suggested that the oil can be used as a preventative measure. Out of 120 children it was used on, 83 did not develop the disease. Unfortunately another family member needs to get the disease before the pre-symptomatic children are tested to see if they carry the gene. I also feel that the film was more about a parent’s love for their child, and less about a miracle cure, which is why the film was so successful. Most every parent can sympathize with loving a child.

Recently scientists claimed a breakthrough that suggests stem cell treatment could rebuild the myelin wall, the part of Lorenzo’s brain that was damaged by the disease.

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