One Girl Raises Her Voice to Cure Epilepsy
By Charlie Deitz
Pittsfield, MA – A student-athlete from Pittsfield is leading the charge to increase funding for research and public awareness about epilepsy. WAMC's Berkshire Bureau Chief Charlie Deitz reports that her efforts have won her some national attention
Jackie Quetti is a triplet who played sports with her two sisters all her life. The 18 year old, who graduated from Pittsfield High School this year, played basket ball, track and field and ran cross country, Jim Abel is the Athletic Director at Pittsfield High, he reflects on her evolution over the 4 years,"She became more and more involved in a variety of activities from Students Against Drunk Driving to volunteering in her community."
But Jackie was diagnosed with epilepsy at the age of 5, and for years suffered over 100 seizures a day at some points, but they're not the typical seizures that come to mind, they're called absence seizures, as she explains, "They're kind of just like staring spells,they would have to repeat my name once or twice, until I came back."
She was able to get on to some control medication that reduced her seizures down to 1 or 2 a day. In spring of 2009, Jackie says, she had the big convulsive seizure that people normally think of when they hear the word, which made her want to get active "I never wanted to talk about it when I was younger,it was very scary, my dad was on the floor next to me, the paramedics were there. A few days later I told my mom I want to help."
So that year she started the region's first epilepsy walk, held in the fall in the neighboring town of Lanesborough, they raised about 10 thousand dollars for research, and just this past fall had another walk and raised another 18 thousand dollars, the walk will now become an annual event. Amidst all of this fund raising and outreach, the Quettis learned more about the grand mal seizure, "I found out that my medication was switched from brand name to generic, no one told me that it was switched."
It wasn't just an administrative error either, the Quettis soon found out that a Massachusetts law requires pharmacies to use generic drugs once they become available, Jackie's neurologist told them that these generics can differ from the brand name recipe by up to 23 percent, enough to send Jackie into a convulsive seizure. She's since been switched back to the premium meds, and has taken her fight to Boston, according to her mother Nancy Quetti "She's actually testified at the state house to create a law that advises physiscians and patients when their meds are going to be switched."
Jackie was contacted by the National Epilepsy Foundation and was asked to become a regional spokesperson, and was even sent down to Washington DC to speak with congressional lawmakers about the need for better research about the condition. And all of this happened before she even graduated High school. Now she's attending part time classes at Berkshire Community College and devoting most of her time to outreach. Nancy Quetti relates that several times people have stopped Jackie to thank her "I never wanted to talk about it either I tried to keep it to myself, until I heard your story."
For all of her work, Jackie will receive the Spirit of Sport Award from the National Federation of State High School Associations, or NFHS, she was chosen for the Region 1 honor, which includes all 6 new England states and New York and New Jersey. She was endorsed for the award by the Massachusetts Interscholastic Athletic Association, or MIAA, whose Assistant Director is Pete Smith "For exemplifying the ideals that go along with education based athletics, that's where Jackie's story comes in."
She'll be honored at Gillette Stadium in Foxborough next Friday. The legislation she fought for is still pending at the state level, and although progress is slow, she remains optimistic. Jackie runs cross country still everyday, partly because she likes it and partly because her doctor seems to think that it's helping her to control her seizures.