RICHMOND, Va. (AP) — Michaela Odone, whose efforts to develop a treatment for her son's rare disease inspired the movie "Lorenzo's Oil," has died at the age of 61.
Odone died of lung cancer Saturday at her home in Fairfax.
She and her husband, Augusto, had no medical training but helped develop a combination of olive and rapeseed oils that they used to treat their son Lorenzo's rare degenerative brain disease, adrenoleukodystrophy, or ALD.
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 said in a telephone interview Sunday. "It's still under scrutiny. The verdict is still out."
After 13 years of treatment, Lorenzo, now 22, is "holding his own," Odone 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 New York-born wife provided to Lorenzo took a toll on her health.