Passages: Lorenzo Odone

I want to take a moment to mark the passing of Lorenzo Odone, the namesake of the movie “Lorenzo’s Oil.” He passed away this week, one day following his 30th birthday, which is at least 20 more years than he was given by doctors at the time of his diagnosis at age 6 with adrenoleukodystrophy, or ALD.

The story of Lorenzo’s oil (which is now the essential treatment for ALD) is a remarkable example of what can happen if lay people get involved in science, and it’s one of the illustrations I use to express hope in a world where knowledge is free. Odone’s parents proved that the needs of parents are different than the needs of scientists, and this paved the way for their remarkable discovery. They “became” scientists, experts in the human processing of enzymes. They were driven by the need to save their son’s life instead of accepting the death sentence that science gave them. That Lorenzo lived to be 30 years old is a testament to their efforts, to say nothing about what their work gave to other children with this awful disease.

Within the lofty towers of medicine and medical research, Lorenzo Odone’s suffering was sad but nothing more. With the right amount of money — and a compelling reason to study the disease — medicine would’ve eventually discovered the same thing. The Odones proved that the reason to study is more important that the money required for the research, and it is in this area that science continues to fail humankind. Popular ailments get the attention and the money, and that’s the flaw in the system.

However, if enough humans with a pressing need can probe deeply enough — regardless of what the institution of medicine says can or “should” be done — I think we’d be amazed at what could happen.

R.I.P., Lorenzo. Gone but not forgotten.

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