Wednesday, October 10, 2007

Lorenzo's Oil

Last weekend there seemed to be a conspiracy in the cable TV world to make me cry! There were several movies on last weekend that always inspire me, and yes, they also make me cry. Of course, I can cry at a reasonably good Hallmark card commercial too! My new favorites these days are the pharmacy commercials where the helpful pharmacists assist elderly people with their medications so they don't get confused and take the wrong pills. I have a big soft spot for elderly folks, and I always have a soft spot for one person helping another!

Last weekend, one of the movies I watched was Lorenzo's Oil. If you have never seen this movie, I strongly encourage you to watch it sometime. Talk about inspiring!!

This is a true story about Augusto and Michaela Odone, who's young son, Lorenzo, is diagnosed with a dreadful and incurable disease called adrenoleukodystrophy (ALD). ALD afflicts only males, and is a degenerative disease that causes immensely cruel suffering. Up until the time that Lorenzo Odone was diagnosed, there were no effective treatments for this relentless, crushing disease. The Odones were told to accept their son's inevitable death, and prepare for the horrors to come.

They simply could not accept that as their only role and they set about to investigate the disease and potential treatments on their own. The disease is rare, and so was considered an 'orphan' disease, meaning the medical community did not devote much research money or time to seeking a cure. To have a child afflicted with such a horrible disease, and know that it is not anyone's priority must be an extremely devastating experience. The Odones knew that no one was going to help their son. It was up to them.

In one discussion between Augusto and Michaela they considered how they might address their son's illness. Augusto likened their situation to relocating to live in a new country (which they had done before). He reminded Michaela that when they had relocated to a new country they had to learn everything about the landscape, culture, customs, language, food and people in order to function and thrive there. He suggested that they needed to approach Lorenzo's disease in the same way, with the same dedication and committment to becoming experts in the disease that afflicted their son. He said that Lorenzo expected it of them. They wanted to do the very best they could for their son. It was an empowering and motivating way to look at the daunting and heartbreaking task before them. They weren't given a choice about the situation they found themselves in, but they did have a choice about how they would engage with it. The choice they made was truly inspiring.

They started to research ALD through all available means. They spent countless hours reading medical research, convening conferences of doctors and researchers, and fund raising to support their efforts. The results of their tenacity and commitment to do everything possible for their son was nothing short of miraculous. They eventually figure out what is actually happening in the disease process, and are instrumental in the creation of an oil, "Lorenzo's Oil" that can stop the progression of the disease and bring immense relief to sufferers and their families. Augusto Odone was actually granted an honorary medical degree for his discoveries with regards to the disease process at work in ALD.

These two people, because they didn't just accept what they were told, changed our world forever. They have saved countless boys and their families from a horrible, cruel disease process.

It is a grand example of what is possible when persistence meets with a determined human spirit, motivated by love. Their tragedy turned in to a blessing for the entire world. We all owe them a debt of gratitude.

Honestly, if you haven't seen this movie... you need to! It will cause you to want to do your very best in every endeavor you take on! It is a triumph of inspiration!

Here are some links for more information:

New York Times Synopsis of Lorenzo's Oil

Wikipedia's article on Lorenzo's oil that gives a bit of information about ALD:

en.wikipedia.org/wiki/Lorenzo's_oil

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