What's up with Lorenzo?

Factual Questions
1

I’m curious if anyone knows the current state of health of Lorenzo Odone, the kid from the movie “Lorenzo’s Oil.” I’ve looked on a number of web sites, but have yet to discover one that talks about him personally in the present tense. Have any of you seen anything I’ve missed?

Chaim Mattis Keller
cmkeller@compuserve.com

“Sherlock Holmes once said that once you have eliminated the
impossible, whatever remains, however improbable, must be
the answer. I, however, do not like to eliminate the impossible.
The impossible often has a kind of integrity to it that the merely improbable lacks.”
– Douglas Adams’s Dirk Gently, Holistic Detective

2

I am not familiar with his fate, and I haven’t seen the movie–but, IIRC, he was diagnosed with adrenoleukodystrophy, a genetic disease which is uniformly fatal.

3

Actually, he might still be hanging in there.

If you’re not already familiar with it here is a link set up by the Odone family itself, and there is no mention of his succumbing to it:

http://www.myelin.org/

4

The following site is maintained by the Odones to coordinate fundraising efforts for reasearch. The site refers to Loenzo in the present tense on one occasion, then leaves his name out of any other pagers, concentrating on medical and financial developments.

http://www.myelin.org/intro.html

Tom~

5

A May 1997 article in the Atlanta Journal-Constitution says that Lorenzo Odone is still alive although his condition has not improved from what was depicted in the film.

I found no obituaries for him in any newspaper database that I searched. I am pretty sure that the New York Times would give him a staff-written obituary.

6

I blew the tanks on this one just to give a footnote, if anyone familiar with this story hasn’t already heard it:

Lorenzo has outlived his mother, Michaela Odone, who died recently.