A journey of 700 - and 2 - miles for epilepsy
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Monday, March 29, 2010
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 more than 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.
Our picks
wow!By Laurie Jacobson on Friday, October 21, 2011 I know the Gassel family must be so proud of their Sammi! What a wonderful role model that young woman is. You rock, Sammi. I love how the whole family was involved -- even the cat. I hope for more people like the Gassels! |
Aunt Joan
By Joan Stein on Friday, October 21, 2011
That is a great accomplishment-soo proud of Sammi!!!