Jackie Quetti of Pittsfield, Mass., is a junior liberal arts major with a minor in theology. She runs track and cross country, and she’s the junior captain of the Blazers cross-country team at the College of Our Lady of the Elms in Chicopee, Mass. Although her athletic and scholastic endeavors keep her busy, she tries to stay involved with Campus Ministry. On top of all that, she’s also the top fundraiser for the Springfield office of the Epilepsy Foundation of New England.
Quetti recently rounded up the men’s and women’s cross-country teams for an 100-mile relay to raise not only money but also awareness of a cause important to her. The Blazers covered the 100 miles in 14 hours, 20 minutes by running continuously around campus and passing a baton from runner to runner. They raised $2,450. Of that total, Quetti herself raised $1,965, nearly doubling her initial goal of $1,000.
She was running for the estimated 3 million Americans and 65 million people around the world who live with epilepsy, a neurological disorder that causes seizures. But she originally got involved for a very personal reason: Quetti herself was diagnosed with epilepsy at age 5. She has absence seizures every day. “An absence seizure is, I could be talking with someone, and my eyes would kind of roll in the back of my head and flutter a little bit, and I wouldn’t remember what I was talking about,” she says. “So my friend would have to remind me what just happened, and we would continue our conversation. But all my friends know about it, and what it is, and they’re very supportive of my condition.”
Her seizures normally last about 5 seconds, but longer ones last around 10 seconds. On good days, she has two; on bad days, up to four. Those are the tiring days, when she has to retreat to bed and rest.
To most of us, competitive running might not sound like a top activity for someone with epilepsy, but Quetti joined her middle school’s running club in eighth grade and loved it so much that she competed all through high school and kept it up at Elms. She runs track and cross country with the Blazers. Her doctor told her that, although she can have (and has had) seizures while running, it’s great for her. “It’s really interesting,” she explains. “I see a neurologist at Boston Children’s Hospital, and he says that long-distance running actually helps. It’s basically a treatment for me, and it helps me have fewer seizures.
“But when I run, I need someone to run with me every time. My coach is really great about it. We’re always running together as a group, but if we have a run on our own one day, or something, I’ll either run on the treadmill or make sure someone’s running with me outside.”
Cross country is a team sport, so most of the time, the whole team runs together as a group and does our workouts together. “Sometimes when we go for our long runs, we separate a little bit, but I always make sure I’m with someone,” Quetti says.
It sounds scary, but she’s matter-of-fact about it. “When they happen during a run, if they’re long seizures, I stop for a minute. And when I come out of it, I just keep on going.”
That positive outlook has gotten her where she is today. That, and hard work and religion. “My faith is very important to me. My faith is really what keeps me going every day,” she explains.
She also credits support from her family (she’s a triplet and very close with her sisters, who do not have epilepsy), her friends and teammates, her professors and the whole Elms community. “Everyone at this college has been super supportive,” she says. “They really want you to be successful. Especially Disability Services; they’ve been really great about accommodations. They’re wonderful people there; they just want you to do really well.”
Quetti, who ultimately wants to work as a child life specialist—a pediatric healthcare professional who works with children and families to help them cope with challenges of hospitalization, illness and disability—wasn’t always so open about her epilepsy. “For the longest time, I didn’t want to talk about it. I was very, very quiet about it,” she explains. “But I had a grand mal seizure in my junior year of high school, and it was very scary.” After she found out the cause of that seizure (her medication had been switched from brand-name to generic) she started to change her mind about hiding. She hasn’t had a grand mal seizure since that day in high school, but it changed her perspective. “A couple weeks later, I thought, ‘What can I do about this? What education and support and awareness can we bring about for epilepsy?’ That’s when my parents and I got in contact with the Epilepsy Foundation, and that’s when I started talking to them and getting support services.”
The Epilepsy Foundation works to secure funding for a cure, to support community-based programs for people with epilepsy, to fight stigma and discrimination, and to protect patient access to medications and treatment. Last summer, the foundation offered Quetti an internship. “It was a really amazing experience,” she said. “I did a lot of different things: I went to a lot of presentations with [program director] Susan Welby; I worked at two epilepsy camps as part of my internship. One of them was in Maine, and the other was in Sturbridge, Mass. I also worked with sales.”
And she is still involved today. The Springfield Walk For Epilepsy was last April, and Quetti was excited to participate. The whole Elms College cross country team was there to support their friend and raise awareness and funds. The money raised from their recent 100-mile relay also went toward Quetti’s team at the walk, and all proceeds will be donated to the foundation.