a bag of snack mix and scoops a half-cup into a baggy and sets it on
the counter. Greg will eat that in his room later, while the rest of
the family sits down to dinner. Leftovers will be saved for Greg’s
hastily prepared dinner the next night.
The family has devised this routine to cope with Greg’s insatiable
need for food and other behavioral issues associated with Prader-Willi
syndrome, a chromosomal disability that has affected him since birth —
and for which there is no known cure.
When food can kill
American life revolves around food. If you think that’s overstated,
ask any of the several Michiana families coping with the effects of
We socialize over lunch or dinner. We celebrate birthdays and other
significant events with lavish desserts. We reward children and show
our love by bestowing treats. We even partake of fellowship in our
houses of worship in the guise of coffee klatches and potlucks.
Freely available food permeates our culture so much that obesity is at
record levels in this country.
For a Prader-Willi syndrome patient, that availability is not only a
life sentence of frustration, but a very real threat to survival.