Instead of allowing epilepsy to define her, Jackie Quetti’s diagnosis drives her

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By David Rosner, Contributing Writer

Jackie Quetti (left) volunteers at TASC with Thrive Support & Advocacy participants.
Jackie Quetti (left) volunteers at TASC with Thrive Support & Advocacy participants.
Photo/courtesy of Jackie Quetti

Marlborough – Marlborough resident Jackie Quetti has epilepsy. But that does not stop her from pursuing and conquering her goals.

Through her persistence, she has become a prominent vocal advocate for epilepsy awareness in Western Massachusetts, a fundraiser leader and organizer, an NCAA athlete, a certified nursing assistant, and an impactful volunteer at Thrive Support & Advocacy, a Marlborough-based non-profit organization that empowers youth and adults with developmental disabilities to lead rich, active, and self-directed lives.

“I don’t wake up every day wondering if I will have a seizure,” Quetti said in a recent interview. I don’t let epilepsy define me.”

 

Personal journey sparks new advocacy

Jackie Quetti was diagnosed with epilepsy when she was five.

Her epilepsy specifically manifests as staring spells known as absence seizures. For Quetti, these episodes cause learning disabilities like processing delays, retrieval disorders, memory loss, and comprehension issues.

For years, Quetti was very hesitant to tell others about her condition. When she was seventeen, though, this all changed. She experienced her first tonic-clonic seizure. That led to loss of consciousness as well as severe muscle contractions.

Working since then, Quetti has organized and conducted five epilepsy fundraising walks over a period of seven years, raising more than $100,000 for the Epilepsy Foundation New England. She then also interned at the Foundation for two years while attending Elms College, where she was an NCAA cross-country and track runner.

“I wanted to come out of my comfort zone and bring epilepsy awareness to my hometown, Pittsfield, as well as Western Massachusetts. There wasn’t a presence of awareness in Berkshire County.”

 

Running provides unexpected treatment, empowerment

Quetti began running in eighth grade, and the sport changed her life. Over time, for reasons still unknown, her doctor at Boston Children’s Hospital figured out long-distance running was a treatment for her seizures, specifically.

Quetti has now run four half marathons. She has completed the Bay State Marathon once and logged countless “5K” races.

“When I run, everyone is super supportive of one another, and that’s what’s really important to me,” she said.

Due to the COVID-19 pandemic, local Marlborough running clubs are not accepting new members. Concurrently, due to her condition, Quetti must run with at least one other person. As a result, she has not been able to run at all over the last year.

 

Move to Marlborough opens new doors

Quetti relocated to Marlborough from Western Massachusetts roughly a year ago to work full-time as a certified nursing assistant at a nursing home in town.

In town, Quetti would continue her advocacy efforts at Thrive Support & Advocacy, where she is a volunteer for the Thrive After School Community (TASC) program.

“My life experiences with learning disabilities and epilepsy help me relate to the TASC participants differently than someone who hasn’t had [to overcome] the obstacles I have,” she said.

She elaborated, “I would never want a child to feel isolated, different, or have people not believe in them. Although everyone is different, I have been in their shoes before.”

Caitlin Devaney-Fortwengler, Thrive’s Director of Youth Services, has glowing things to say about Quetti, calling her “a natural.”

“She is so involved,” Devaney-Fortwengler said in comments to the Community Advocate. “Her ease of conversation with the kids and her unique connection with TASC participants [is so strong] because she has been through many of the same experiences and challenges as them.” She went on, saying, “I have been doing this job for a long time. I’ve seen staff and volunteers come and go. But Jackie is the real deal.”