Michaela Odone Dies
(from Newsweek and Washingtonpost.com, June 10, 2000)
Michaela Odone, 61, whose efforts to develop a treatment for her son's rare disease inspired the 1992 movie "Lorenzo's Oil," in which she was portrayed by Susan Sarandon, died of lung cancer June 10 at her home in Fairfax, Virginia.
Mrs. Odone and her husband, Augusto, who was portrayed in the film by Nick Nolte, had no medical training. Yet they helped develop a combination of olive and rapeseed oils that they used to treat their son Lorenzo's rare degenerative brain disease, adrenoleukodystrophy.
The oil stopped the progression of Lorenzo's disease and allowed the boy, once in a vegetative state, to communicate slightly with hand signals.
Researchers were initially skeptical, but clinical studies showed that the treatment worked about half the time if administered in the disease's early stages.
"The definitive truth will only come in 10 to 15 years," Augusto Odone told the Associated Press yesterday. "It's still under scrutiny. The verdict is still out."
Lorenzo, now 22, is "holding his own," his father said. "He doesn't have any bedsores because of the care Michaela provided. He looks healthy, but he hasn't recovered any functions in a big way."
Augusto Odone said the constant care his wife provided to Lorenzo took a toll on her health.
"It was her sacrifice for Lorenzo. She was with him 16 hours a day, continuously," he said. "She did not go out. We did not entertain people. We did not travel. We did not take vacations. It wore her out."
Hugo Moser, a Johns Hopkins University neurology professor who had been familiar with Lorenzo Odone's case since it was diagnosed in 1984, told a Washington Post reporter in 1991 that he had doubts about the ultimate value of the Odones' discovery. However, he had nothing but praise for the personal dedication of the parents.
"It is a lesson for professionals: People who are bright and highly motivated can learn just about anything," he said. He said of the Odones: "They're as bright as can be and driven as can be, and they will stop at nothing to restore Lorenzo. How can anybody criticize that?"
In the Post story, Mrs. Odone told of the heartbreak and anger she went through at the onset of Lorenzo's illness. The family had just returned from the Comoro Islands, where her husband had been serving with the World Bank.
Lorenzo's speech began to become slurred, he began throwing afternoon tantrums for no apparent reason and he began to lose his hearing. The Odones consulted physicians and psychologists (who deduced Lorenzo was "brain-damaged") and other sspecialists before finally determining that the culprit was ALD.
ALD, a hereditary malady, is carried by females and afflicts young boys almost exclusively. It is estimated that 1,400 people in the United States have the disease.
The Odones were told that there was no fighting the disease and that they should not bother resarching it themselves. One physician told them the literature was too technical for them to master.
The Odones refused to give up, and the rest is medical history.
Mrs. Odone, who came to Washington in 1976, was a native of Yonkers, N.Y., and a 1962 French graduate of Sacred Heart College. She became an accomplished linguist--eventually fluent in French, Spanish, and Italian, as well as reading in Latin.
She was an editor, linguist and management consultant in New York before her marriage in the mid-1970s.
During the family's years in the Comoros, from 1980 to 1983, she did editing and translating work on her husband's reports. She also was active in charitable work, volunteering in hospitals and securing supplies, at her own expense, for those in need.
In addition to her husband and their son, her survivors include two stepchildren, two sisters and a brother.