I will never forget the horrible day Ryan had his first tonic-clonic seizure, at age 5. Fortunately, Ryan's epilepsy responded to medication and after a time he was able to live relatively seizure-free. Even more fortunately he outgrew his epilepsy and we are now able to look back fondly on some of those times, like getting up at 2 a.m. and going to the airport (pre-9/11) and up into the observation deck to watch airplanes while we waited until it was time to go to the hospital for his sleep-deprived EEGs.
The first thing you notice about 12-year-old Nora Leitner is the dark circles under her eyes. They stand in stark contrast to the rest of her appearance; at a glance she might be any petite, pretty tween girl, with her blond ponytail, elfin frame and thousand-watt smile. But the circles tell a different story: Nora looks as if she hasn’t slept in a month.
In a sense, she hasn’t. Nora has epilepsy, and as with 30 percent of those with the disorder, her seizures are not controlled by existing treatments.
She often has more than one seizure a day, mostly at night. Her seizures, called tonic-clonic (what used to be known as grand mal), cause her to lose consciousness for a full minute while her body convulses.
While some people feel an “aura” of symptoms before a seizure, Nora’s happen entirely without warning. When she seized at the top of a staircase in her home in Yardley, Pa., it was plain luck that her parents were at the bottom and caught her as she fell. Though she is on the brink of adolescence, she is rarely, if ever, left alone.
But it is an awful disease and it is sad to still read that funding to research it is hampered because it carries a stigma and has no "icons" to call attention to it and help raise awareness and money.