Movie about a kid with a terrible illness (with many phases of body function losses)

I've been looking for this movie about a boy who gets a rare illness.

This illness starts when the boy is between 5-9 years old and is based on a real person's story. The illness has many symptoms involving the illness one by one. First the boy gets pains, then becomes blind, then deaf, then bald, etc.

It's a very good movie, but very horrid and disturbing at the same time (due to the illness, that is).

I remember the father of the boy to be a famous face, possibly James Woods or Nick Nolte. I've checked both their filmographies but couldn't find it.

Thanks to anyone who can give me any answers or hints!

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