A Real-Life Sequel to 'Lorenzo's Oil'

For the oil to be useful, all newborn babies would have to be tested for ALD using the nationwide screening program that detects many other genetic disorders. But no one had a test that worked.

Until now.

Finding a Marker

Augusto Odone and his wife, Michaela, were referred to Moser shortly after Lorenzo was diagnosed; the neurologist at the Kennedy Krieger Institute in Baltimore was one of the few experts in the country interested in the rare disease.

The Odones already knew that there was no cure for the genetic disorder, which causes a buildup of substances known as very long chain fatty acids and strips nerve cells of their protective myelin sheaths. (Multiple sclerosis causes similar damage, but much more slowly and for different reasons.)

ALD causes a host of terrible problems, including deafness, seizures and difficulty with movement. Once symptoms appear, the Odones learned, the children die within a few years.

Refusing to accept this death sentence, the Odones began their own search for a treatment. Reading obscure scientific journals and drawing on a wide range of scientific experts, they discovered that a derivative of olive oil and rapeseed oil might counteract the buildup.

Scientists thought that the oil was dangerous, but as Lorenzo went downhill rapidly, the Odones took a chance on it. They found out that rapeseed oil was widely consumed in many parts of Asia and, after testing the oil derivative on a family member, they gave it to Lorenzo. Augusto Odone believes his son is still alive today because of the treatment.

The dramatic arc of the movie explored the tension between a parent's desire to do anything for a sick child and a scientist's impulse to gather data in a precise and methodical manner. The Odones were in a race against time to help their son; Moser was cautious about spreading false hope and wanted to collect evidence, not anecdotes.

Hollywood found the idea of intuitive leaps of faith more appealing -- and the movie strongly suggests that the only thing keeping brilliant cures from the public is the stubbornness of scientists who insist on their plodding ways. In the movie, the Odones accuse Moser's character of being more interested in scientific accolades than in helping their son. In one climactic scene, Lorenzo's mother, played by Susan Sarandon, accuses the neurologist Nikolais, played by Peter Ustinov, of being a callous coward.

"The life of one boy," Michaela Odone venomously tells Nikolais, "is not enough reward for you to risk the reputation of the institution and the esteem of your peers."

Parents and scientists do have conflicting motivations, but the movie's narrative failed to see two things. Moser's methodical steps masked a passion and determination that would far outlast those of families focused on a single patient. Hollywood also failed to see how the separate motivations of parents and scientists could work well together, and it was left to real life to provide that happier ending.

Moser said that even as the Odones were accusing him of going too slow, he was hearing from medical colleagues outraged that the oil treatment was being oversold; some families spent fortunes getting their hands on it only to find it didn't help. "There was a feeling it was snake oil and people were taking financial advantage of desperate patients," Moser said.