A journey of 700 – and 2 – miles for epilepsy

Pam Gassel used to watch her daughter, Sammi, walk from the car to school with a mixture of fear and anxiety. She knew that Sammi, who was diagnosed with epilepsy in eighth grade, was one seizure away from a fall.

“You’re always nervous, always worrying,” says Gassel, who lives in Wilmette. “She’d get really mad at me. She’d say ‘Leave me alone, let me do this, I’ll be OK.'”

Phil Gattone, president of the Epilepsy Foundation of Chicago, and Sammi Gassel, of Wilmette, caught up at the National Walk for Epilepsy in Washington, D.C. last weekend.

Last Saturday, it was with pride that Gassel watched Sammi, now a 20-year-old college junior, walk two miles around the National Mall in Washington, D.C. in the National Walk for Epilepsy. About 10,000 people turned out and the event raised $1.5 million for treatment, awareness and research, organizers said.

About 200,000 new cases of epilepsy are diagnosed each year in the United States — about the same number as breast cancer. And about 40 percent of those people will not respond to drugs.

“It’s really hidden in plain sight,” says Philip Gattone, president of the Epilepsy Foundation of Chicago, who attended the walk with his son, a 23-year-old computer engineer who has epilepsy.

A recent tragedy brought epilepsy to the surface for Chicagoans. In December,4-year-old Danny Stanton, who lived with his family on the city’s north side, died when he suffered a seizure in his sleep. Gattone wore a button with Danny’s picture on it during Saturday’s walk.

Sammi Gassel (right) and her sister, Katie, pose with Greg Grunberg, star of NBC’s “Heroes” and epilepsy advocate.

The Gassels participated in walks in Wheaton and Chicago last year and decided to make the trip to Washington this year for the national event.

“I’ve just been getting more and more involved over the years, and I wanted to be at the center of it,” says Sammi, who volunteered for the Chicago Epilepsy Foundation last summer and has stayed involved while at school in Boston.

Diagnosed at 13, Sammi knows she is lucky. Her epilepsy is mostly controlled with anti-seizure medications, and she has avoided the physical or mental disabilities that can often coexist with epilepsy.

“Not everyone has the opportunities I do to teach people, to kind of be an ambassador,” Sammi says. Now a junior at Emerson College in Boston, she has taught small seminars to her education classes and isn’t shy about telling people she has epilepsy.

Instead of asking for donations -“my friends are all broke college students,” she says – Sammi asked people to pledge a thought for people with epilepsy. Her Facebook group has more than 220 members and dozens of friends signed a banner that she carried around the National Mall on Saturday.And the donations came in anyway; Team Tori, named after the Gassel family cat, raised more than $450 for the foundation.

“To see her there, it was exciting and emotional and proud all rolled into one,” Pam says. “From the beginning, how she reacts to her (epilepsy) is how I react, and seeing her so proud and outspoken was great.”

Even though epilepsy affects about 1 percent of Americans, it lags far behind other diseases in awareness, acceptance and treatment. There is no cure, though some types of seizures can be controlled by medication or surgery.

Epilepsy affects morethan 325,000 American kids under the age of 15, and an estimated 125,000 people in the greater Chicago region. To learn more, visit the Epilepsy Foundation of Chicago’s Web site.

Sammi Gassel

-year at college? School?

It was awesome–

last summer, decided that i wanted to do some volunteer work, ever since i was diagnosed, been really open about it, thought it would be a good place to go. really enjoy it — very big on idea that people should talk about it, be open about it, Talk About It. Chicago

summer camp,

went out with community educator, tell them about my experiences, helped plan some fundraising stuff. worked for two days at Camp Blackhawk, northwestern Illinois.

diagnosed when 13. started hving myochronics, little shaky things. looked them up online, just knew they were seizures. told my doctor, said you can’t diagnose yourself, only in 8th gadde. two weeks before the tst, i woke up having a bunch of them, then had a grand mal seizure.

then it wasn’t a huge shock, already accepted it. going through the end of 8th grade and ghih school .

got to college, worse, drinks all-nighters. a little difficult at first, but people really don’t care.

most people are shocked when i tell them. i’ve done some little classes with one of my education classes. how many different types there are, that 1 in 100 people have epilepsy.

my last grand mal was a year and a half ago. still occasinally have smaller seizures, but don’t bother me that much. lack of sleep and stress.

Emerson, junior.

JME usually stop having seizures

this summer, i just really got into it and I asked my parents if we could go. the walkw as really fun, purple shirts, cool to see how many people had it. They ran out of purple shirts. Greg is just the nicest guy, and it’s really cool to see him so into it.

just awesome to see all those supporters. he was talking about how his sons will all be playing vidoe games and start scoring all the points while he’s out.

i have a sense of humor about it.

older, 26.

she definitely tells me she’s. i know it’s been hard for her, i’m unconscious during teh seizures, not her fault in the slightest. she’s been really strong about it, tries really hard to learn about seizures.

i didn’t want to ask all my college friends to donate money, so i asked people to pledge a thought, signed a thing. made a facebook group. i got $500. 220 signatures.

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