“It is with great sadness that we announce that Lorenzo Odone passed away May 30, 2008, in his sleep, at home in Fairfax, Virginia, with both his father, Augusto, and his life-long friend, Omouri Hassane, at his side.” This is the message I found posted on The Myelin Project website yesterday. It made me very sad indeed.

Lorenzo, whose battle with ALD is told in the inspiring film Lorenzo’s Oil, turned 30 years old on the day before he died. Although spending most of his life deprived of sight and other bodily functions, he could read and his mind was active. He communicated by blinking his eyelids and wiggling his fingers. He loved being read to and listening to music.

Until the age of five, Lorenzo was an active boy who spoke three languages. When his teachers noticed behavioral changes, they informed his parents, Augusto and Michaela, about their concerns. Then, in 1984, Lorenzo was diagnosed with Adrenoleukodystrophy (ALD), a rare, incurable genetic disorder. Doctors told the Odones their son would not live to be a teenager. Augusto and Michaela refused to look at this illness as incurable, so they began doing research on their own. After two years of fighting with the medical establishment and parents of other ALD boys, they discovered a blend of plant oils they thought would help their son and developed a therapy that reduces the biochemical defect of ALD. They also founded The Myelin Project, a multi-national organization designed to facilitate research on myelin repair.  Myelin, the white matter insulating the nerves, allows the conduction of impulses from one part of the body to another. It can be destroyed by hereditary neurodegenerative disorders. All together, demyelinating diseases (including ALD) affect an estimated one million people in the industrialized countries alone.

I became acquainted with The Myelin Project while researching my book, Susan Sarandon: A True Maverick. Sarandon delivered one of her most powerful performances as Michaela Odone in Lorenzo’s Oil, then signed on as the spokesperson for The Myelin Project. According to Augosto Odone, the real value of the Lorenzo’s Oil movie has been to show people that in cases where you have a disease in the family or yourself, you have to be proactive. Because of my admiration for the important work being done by the The Myelin Project, I was pleased to donate my author’s royalties to this worthy cause. 

Dr. Ian Duncan, one of The Myelin Project’s Work Group scientists, told People magazine, “The Myelin Project has given us more than money…it has given us inspiration and has provided us with a human context.”

Lorenzo Odone has been -- and will always remain -- an inspiration to us all. 

For more information about Lorenzo and The Myelin Project, please go to www.myelin.org.

(Lorenzo’s Oil poster: © 1993 Universal Pictures. All Rights Reserved.)