The real Odones | EW.com

Movies

The real Odones

The real Odones -- We talk to the family behind ''Lorenzo's Oil''

”You renew the pain and sorrow as you first watch it,” Augusto Odone recalls of viewing Lorenzo’s Oil, reliving the battle against his son’s ALD, the disease that has left him helpless.

Although they participated in preproduction, Augusto and Michaela Odone — the real-life couple depicted in the movie — were not actively involved on the set. They saw the completed film just a few weeks before its release in a private screening room near their home. It provoked too strong an emotion in them for a single viewing, so the couple watched it twice. The soft-spoken Augusto thought Nolte’s Italian accent was ”not always intelligible,” and the outspoken Michaela insists that she did not ”invite my sister to leave my house,” as the movie has it. But the Odones did feel the film was ”emotional without being maudlin.”

Watching Lorenzo’s Oil, viewers may wonder how the couple survived the odds-against struggle. ”It tapped potential we didn’t know was there,” says Augusto. On those long nights in 1985 when Michaela provided her son’s round-the-clock care, she read newspapers and ”became aware of the gallant population of AIDS patients. I was quietly and joyfully getting help from their struggle to take responsibility for their own health,” she says.

”The continuous commitment has changed our lives and modified our characters,” Augusto says, referring to the three-year-old Myelin Project, a research endeavor begun by the Odones to find a way to regrow myelin — the fatty sheath insulating nerves that is destroyed by the ravages of ALD. If the project, for which the Odones have raised more than $1 million, is a success, the family could return to Italy where they still have a house. ”It would be fantastic,” says Augusto, who adds that he and Michaela can rarely be out of the house at the same time. ”We could get a little more sleep.” And enjoy the simple pleasure of going to a movie just like everybody else.