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

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By Shankar Vedantam
Washington Post Staff Writer
Sunday, January 28, 2007

Most people in the world who knew anything of Hugo Moser knew him only as Professor Nikolais, the impersonal scientist largely impervious to the suffering of his patients in the hit 1992 movie "Lorenzo's Oil." Which is to say most people didn't know Moser at all.

One person who did know the Baltimore neurologist, who died eight days ago of pancreatic cancer, is Augusto Odone, father of the real-life Lorenzo. Though terribly disabled by the cruel genetic disease depicted in the movie, Lorenzo is still alive at age 28.

Odone, now 83 and living in Fairfax, was once Moser's critic, but he became one of the scientist's biggest fans. He knows that right up to the day Moser died at age 82, the scientist was passionate about fighting Lorenzo's disease, known as adrenoleukodystrophy or ALD.

Moser cared so much, in fact, that even as his strength slipped away after surgery for cancer and painful blood clots, and as doctors debated whether to amputate his legs, he and his lab team kept working on a long-sought screening test that could soon eliminate much of the suffering caused by ALD -- the suffering that Moser's character in the movie supposedly cared so little about.

In a final interview shortly before he died, Moser reflected wryly on the movie: "The good guys were given real names. The bad guys were given pseudonyms."

But Moser turned his hurt over his portrayal in the movie into a weapon against the rare disease, which mostly targets young boys and sends them spiraling into brain failure and death. If the movie could spur public interest and help find a cure, he was more than willing to accept the public distaste for his character in the movie.

"He was angry," his wife, Ann, said.

Moser gently contradicted her. "In the long run," he said, "I have been immensely helped by the movie."

Cable television still regularly runs "Lorenzo's Oil," which depicts how Odone discovered that patients with ALD could benefit from a derivative of olive oil and rapeseed oil. But it was Moser who took that inspiration and demonstrated the oil's uses -- and limitations -- by doing methodical science, the very science disdained in the movie as impersonal and cold.

As the years progressed, Moser and Odone came to an understanding very different from the one portrayed in "Lorenzo's Oil" -- each man realized that whatever he had achieved against ALD would have meant little without the other's contribution.

Moser showed that treatment with the oil was useful, but only if given before the afflicted boys began to show symptoms. Because most parents have no way of knowing that their sons have the disease until symptoms occur, treatment with Lorenzo's oil has turned out to have limited value.

His father's discovery came too late for Lorenzo. He has not spoken a word for 23 years as a consequence of ALD's pervasive -- and apparently irreversible -- neurological damage.


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