CHARLIE’S STORY
On March 11, 1993, I was pushing my son, Charlie, in a swing when his head twitched
and he threw his right arm in the air. The whole event was so subtle that I didn’t
even think to mention it to Nancy, my wife, until a couple of days later when
it reoccurred. She said she had seen a similar incident. That was the beginning
of an agony I am without words to describe.
Nine months later, after thousands of seizures, an incredible array of drugs,
dozens of blood draws, eight hospitalizations, a mountain of EEGs, MRIs, CAT
scans, and PET scans, one fruitless brain surgery, five pediatric neurologists
in three cities, two homeopathists, and countless prayers, Charlie’s seizures
were unchecked. His development was “delayed”, and he had a prognosis
of continued seizures and progressive retardation.
Then, in December 1993, we learned about an obscure diet, consisting mainly of
fat, that was effective for some kids with difficult to control seizures. We
took Charlie to John Hopkins Hospital, where he started the diet. Since Christmas,
1993 he has been seizure and drug free. As of November 2002 Charlie is a happy
fourth grader in Santa monica, CA. His interests include piano, cello, James
Brown, and dinosaurs. He remains seizure and drug free and has been off the diet
for several years. His favorite song is "I feel good".
It is clear that when a family had been affected by epilepsy, each member
is changed forever. We are determined to put silver lining on Charlie’s
experience by providing information and education about the diet to both parents
and the medical community, and by supporting research into the ketogenic diet’s
mechanisms.
No Frames Nav
