I was just reading "Jesse's Intent", a speech by Paul Gelsinger given at
the ARENA meeting on 10/31/2000.  ARENA is the national organization for
IRBs and research ethics.  Jesse was the 18 year old boy who died
following a gene transfer research experiment at CHOP, I believe.  The
speech is heartbreaking.

"He nursed until he was nearly two years old.  It wasn't until Jesse was
about two years and eight months old that his metabolic disorder
[ornithine transcarbamylase deficiency syndrome or OTC] reared its ugly
head.  Jesse had always been a very picky eater.  Since weaning, he would
more and more refuse to eat meat and dairy products..."

Interesting reference.  Struck me how nursing appeared to have delayed the
appearance of symptoms.

Shannon McElearney, MD
UVA

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