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Charlie’s Story

When I arrived at Johns Hopkins just before Thanksgiving in 1993 I was 20 months old. I weighed about 19 pounds and was taking Dilantin, Felbatol, Tegratol, and transene several times every day. I still had a bandage on the back of my head from when they operated on my brain. I had been having dozens, sometimes as many as a hundred seizures a day for a year. Then Dr. Freeman and Diana Pillas and Mrs. Kelly changed what I ate. My seizures were gone in two days. I was off all those drugs in a month. I’m not sure what would have become of me if my family hadn’t found the ketogenic diet, but I doubt that today I would be an A student in high school with lots of friends; I doubt I would have been playing piano for the last eight years; and I doubt I could hit an eight iron 160 yards. I even think I will soon reach a lifetime goal of being able to kick my older brother’s butt. But I was one of the few lucky ones. Since the diet was invented there have been millions of kids all over the world just like me, who were as sick as I was, but whose families either never heard about the diet or were talked out of it. I want to thank Mrs. Kelly, the dietitian at Johns Hopkins who told my parents what I was supposed to eat. It was complicated, and knowing them as well as I do today, I’ll bet working with them was a real challenge for Mrs. Kelly. But Mrs. Kelly patiently hand calculated every bite that went in my mouth for five years. The truly amazing thing is that Mrs. Kelly had been doing the same thing for hundreds of children for over forty years before I got there, and continued for several years after I left. So I would like recognize Mrs. Kelly with love, gratitude, and admiration for a lifetime of helping children with epilepsy.

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