The Recorder

Canajoharie girl to be honored for Epilepsy Foundation fundraising

Photo submitted From left, Episepsy Foundation of Northeastern New York Executive Director Jeannine Garab, Paige Schaffer, and Paige’s mother, Tara Kenney.

Photo submitted
From left, Episepsy Foundation of Northeastern New York Executive Director Jeannine Garab, Paige Schaffer, and Paige’s mother, Tara Kenney.

By JOSHUA THOMAS

For The Recorder

CANAJOHARIE — Paige Schaffer, a six-year-old Canajoharie resident, will be honored by the Epilepsy Foundation of Northeastern New York on Nov. 2 for three years of outstanding fundraising contributions totaling more than $8,000.

Paige was diagnosed at age two with Lennox Gastaut Syndrome, a severe form of epilepsy.

Paige and her family began fundraising for the Epilepsy Foundation of Northeastern New York (EFNENY) several years ago, twice bringing in significant amounts of money via events at the Fonda Speedway where her father, Chris, was employed as a race car driver. EFNENY was originally founded in 1981 to serve people with epilepsy across 22 counties.

Paige was awarded for bringing in the most money for EFNENY for two consecutive years and was provided two trophies for her efforts. This year, since Chris wasn’t racing, Paige’s family brainstormed another way they could bring in money for EFNENY by launching a bottle drive in May.

Once again, Paige topped herself, raising $5,348 for the organization. The money was presented during the annual Saratoga Stroll for Epilepsy, held Sept. 10.

“People were dropping off bottles left and right,” Paige’s mother, Tara Kenney, said.

She said people from her place of employment were extremely supportive, as were Chris’s fellow village employees. Local restaurants and redemption centers accepted bottles on Paige’s behalf, with many also providing monetary donations.

“It just turned into far more than I expected,” Kenney, said.

She said while Paige is non-verbal, she showed excitement at the vast support.

“Paige really enjoyed getting her bottles and taking her bottles back,” she said, adding that the incredibly supportive community was just as thrilled to assist the young Canajoharie resident in her ongoing mission.

“People love Paige,” Kenney said. “She has a winning spirit and a winning personality about her. People have always been drawn to her.”

Paige, Kenney explained, has been epileptic since she was four moths old, at which time she was diagnosed with infantile spasms that developed into Lennox Gastaut Syndrome. Since the diagnosis, seizures have become increasingly severe.

Though Paige is on multiple medications, with a Vegas Nerve Stimulation implant in her chest aimed at stimulating a nerve to reduce seizure activity, her seizures remain hard to control.

While raising money for EFNENY is important for the Schaffer/Kenney family, raising awareness is also a major goal.

EFNENY Executive Director Jeannine Garab said the foundation is the only community organization working to “help people overcome the challenges of living with epilepsy.”

Garab said the fact that the Schaffer/Kenney family is continually willing to share information about Paige’s condition, which is incredibly helpful in raising epilepsy awareness. The disorder impacts 45,000 people across the 22 counties EFNENY serves.

Garab said one in 26 people will develop epilepsy in their lifetime.

“The more people we can make aware, the more people we can reach out to and help,” she said.

To spread awareness, Paige has been selected as the face of Montgomery and Fulton counties in an upcoming EFNENY Faces of Epilepsy campaign. There are 100 posters soon scheduled for placement in various public spaces throughout the two counties.

Paige, said Garab, is a constant inspiration for those working for and with EFNENY.

“We consider Paige to be a role model,” she said.

She said the organization will be proud in November to honor her for three years of outstanding, multi-faceted contributions.

Garab said when EFNENY first learned that Paige and her family raised more than $5,000 during this year’s bottle drive alone, they were “totally blown away.”

“To be honest, we could not imagine you could raise over $5,000 by raising nickel deposits on returning bottles,” Garab said.

She said the donation will go far in assisting EFNENY with its goal of employing staff trained in epilepsy, seizures, and treatments.

Kenney said that while Paige’s care has proved costly — her family only having taken in a few hundred dollars through local change donations — their outstanding goal has continually been “to always do as much as we can to give back to families in need.” 

Kenney said although it’s hard to gauge Paige’s full understanding of the work she’s done for others, her daughter is “very smart and has good receptive skills.” Being awarded for her past contributions to EFNENY provided Paige with a visible thrill.

“She definitely likes to be in the spotlight — the center of attention,” Kenney said.

Upon receiving her two, well-earned trophies in the past, Paige lifted them above her head, a big smile on her face.

“They were very important to her,” Kenney said.

To honor Paige is to make her aware that she has had a widespread impact, and Kenney said the Nov. 2 event is sure to put a huge smile on the face of a “happy, loving little girl,” who has always been, and will long continue to be, beloved and revered by so many people.