A couple weeks ago, I caught the movie Lorenzo's Oil on tv. If you've never heard of it, the movie is about a boy, Lorenzo, who becomes stricken with a rare disease (ALD) that eats his brain and paralyzes his whole body. His parents along with scientists develop an oil that helps retard the progress of the disease. Before the oil is completed, Lorenzo can basically breathe by himself, often choking on his own saliva, and that's about it. Once his parents initiate the oil treatment he can breathe without choking. So the movie ends with Lorenzo being 12 years old and he can blink and move one finger in responses to "yes or no" questions.
Bad news: most boys with this disease only live about 2 years at most from onset.
Good news: with the development of Lorenzo's Oil, if given at the first sight of symptoms, the disease's progress is stopped and the boys can live a long normal life.
OK, so on with my beef about this poor guy.
This movie is based on a real family. So I decided to look online and see what happened to Lorenzo. He is 28 and can wiggle his fingers and blink in response to "yes and no" questions. That's it. They say, "He enjoys music and being read to." How do they know? They ask him this everyday?
So is this child abuse? Keeping a child alive because you as the parent, family or friend believe he wants to hold on to his meager life so that you don't have to let go.
I think it's great that by keeping him alive that they were able to develop this oil that helps out all the other boys with the disease. However, do they ever ask him, "Do you want to still be alive?" I know this debate came up with the whole Terry Schiavo fiasco. Why is it so important for us to live under any conditions possible? Why can't it be OK for a person to want to die? Do we all have to be heroic survivors of whatever life/biology hands us?
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3 comments:
Well it sounds like they can communicate with him. Terry Schiavo was basically a zombie but this guy's just paralyzed--Right? Should Steven Hawking kill himself? Seriously though, maybe they do ask him every now and then if he likes living...he can blink once for yes and twice for "kill me please!"
Yay James. I'm so happy you're here. Yes, Lorenzo is just paralyzed; he's fed through a tube and he can't speak.
So he is like Hawking without all the technology. Maybe that's all Schiavo needed, some technology to read her thoughts. I did see Hawking on TV last night and thought, "would I rather be a paralyzed genius or a walking idiot?" I still don't know. However, Steven Hawking, unlike Lorenzo, developed his disease as an adult and decided himself to live with his disease.
I vote walking idiot. Seeing as I'm already there it worked out pretty well for me.
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