The person whom I will write about today couldn’t see, speak, or move independently. He loved to be read to and he loved being in the water. He died yesterday at his home surrounded by family. His name was Lorenzo Michael Murphy Odone. And he inspired two ordinary people to do something extraordinary.
In 1983, Michaela and Augusto Odone just returned from living abroad to Virginia. They were incredibly happy; they had good jobs, a beautiful house, and a handsome five year old son, Lorenzo. But soon Lorenzo started to act up at school, and he started losing his motor functions. They found out Lorenzo had Adrenoleukodystrophy, also known as ALD. ALD affects boys from the ages from 5-10, and it was predicted for Lorenzo what happened to many boys: he would lose his sight, he would not move, he would end up in a coma, and die.
But here’s the deal: The Odones were not going to give up on their son. They started to search for answers. They went to medical libraries, asked questions, contacted support groups. A lot of people said to them they were living in a fool’s paradise. Stop it, give up, your son might be better off dead. But they couldn’t give up, wouldn’t give up on their son.
Finally, they found something: cooking oil that decreased the ALD from spreading. After giving it to Lorenzo, the ALD was arrested. However, it was too late for Lorenzo; the ALD had done its damage.
However, it wasn’t too late for other young boys. Soon Lorenzo’s Oil became available to other boys suffering from ALD, and it started to save lives. Many of these boys grew up to be men, getting married, having children. It couldn’t save all the boys suffering from ALD, but it saved many.
In 1992, a movie based on the Odones came out called Lorenzo’s Oil, starring Susan Sarandon and Nick Nolte. Any time I see this movie, I’m okay until the end. Then the ending shows boys saying their names, how long they have taken Lorenzo’s Oil, and we see them playing baseball, running, playing with their friends, and at the end, there is a loud cheer.
Michaela Odone died in 2000. As tragic as her death was, there was one good thing about it: Her son got to outlive her.
A day after Lorenzo’s 30th birthday, Lorenzo died yesterday after food got stuck in his lungs. He is survived by his father and a brother and sister. Augusto Odone said he wasn’t in pain and didn’t suffer.
Many mourn for Lorenzo, and when I found out the news last night, I felt this sharp sadness that surprised me. Then I visualized something: I saw Michaela Odone, looking around, expecting someone. She sees her son, walking, talking, saying Mom, Mom, I’m here. She opens her arms to her son. He runs over to her. No other words are necessary.
And did you get what
you wanted from this life, even so?
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
Causes Jennifer Gibbons Supports
Gilda's Club, Greenpeace, Rosie's Broadway Kids,Westwind Foster Family Agency, Amber Brown Fund, Linda Duncan Fund for Contra Costa Libraries