Lorenzo's Oil

We saw a movie in Ethics class today - Lorenzo's Oil. The point of the movie was to stimulate thought or discussion or whatever on doctor-patient relationships and the scientific method. So, we sit through all this and at the end, the parents joyfully get the news that all their hard work and research has paid off. Lorenzo's lab results are normal, and the audience is left with the suggestion that since the harmful proteins were gone, Lorenzo was going to be okay.

So, I get home and I'm curious. This is supposedly based off a true story. Google and I am are close, so I do a little digging. Interestingly, Lorenzo is now 27 years old (normally people with his particular degenerative neurological disease only live 6 or 7 years). Wow, I'm momentarily impressed by the father's dedication and success in saving his son's life. Then I keep reading. Lorenzo is totally paralyzed. He cannot speak, and he "has not recovered any functions" which would seem to indicate he is deaf/hearing impaired and blind as well. But he is still mentally capable and apparently communicates by blinking to indicate yes and wiggling his fingers to indicate no.

Good god. What kind of life is that? To be trapped in a body that doesn't let you feel or move or talk or see or eat or talk and be conscious of it? I think the class missed the point - the real ethical question is right there.