Jennifer Marasco Kuhn (from left) walks with daughter Cora, husband, Chris, and daughter, Maggie, participate in Semper Gratus’ Shamrock Shuffle 5K recently. Courtesy photo

Hollidaysburg native Jennifer Marasco Kuhn’s life turned upside down when her daughter, Cora, was diagnosed with a rare form of epilepsy known as Dravet Syndrome before her first birthday.

According to the Dravet Syndrome Foundation website, the rare disease affects about one in 15,700 births. A majority of patients experience prolonged and frequent seizures, behavioral and developmental delays.

There is a 15% to 20% mortality rate for patients, as treatment options are currently limited.

“It took a lot of that typical new parent stuff away, and we had to refocus to advocate for ourselves and her (Cora),” Kuhn said.

Since Cora’s diagnosis, the Kuhns have helped their 5-year-old daughter through 38 seizures, 19 hospitalizations and five intensive care visits while advocating for Dravet Syndrome awareness through their “Dye it for Dravet” social media fundraising campaign.

Hearing about the disease, Pittsburgh-based nonprofit Semper Gratus honored the Kuhns at their annual event on March 21 at the West Leechburg Volunteer Fire Department’s recreation hall.

Cora’s image was featured on the awards presented at Semper Gratus’ Shamrock Shuffle 5k and 1-mile walk, and the Kuhn family later received gifts and support at the Small Town Loud Voice event.

“To be recognized by an organization and community that wanted to open their arms to us,” Kuhn said, “it was really welcoming and a beautiful experience.”

Since its inception 11 years ago, Semper Gratus selects a family to honor at its annual event, which in turn raises awareness about that particular disease, according to nonprofit President Ian Coyle. Focusing on rare conditions, they work to create awareness and aid affected families.

Their organization is about “finding a way to support them (families) and make life a little easier,” he said.

March’s event raised $120,000, not including funds from corporate sponsorships, Coyle said. Funds will be distributed to event expenses, the Dravet Syndrome Foundation and a sensory room addition to the Kuhns’ house, which will be built with help from sponsors.

Jennifer Marasco Kuhn’s father, Ralph Marasco, said he “couldn’t have asked for more than what they (Semper Gratus) did for my daughter and her husband.”

With the nonprofit’s strong team, Coyle said, “there is a sense of empowerment from the community. They feel heard and see tangible results and outcomes, and they feel like they’re a part of Semper Gratus that makes the magic every year.”

Over the last four years, the Kuhns have been nominated five times by various individuals for Semper Gratus’ family of honor recognition.

Coyle said he chose the Kuhns because of their humility, motivation and Cora’s contagious smile.

“The Kuhn family is undeniably humble and Jen is unbelievably motivated and articulate to talk through their story and use it to empower others, too,” he said.

Kuhn, her husband, Chris, daughter, Maggie, 8, and Cora currently live in Verona, where they continue to spread awareness about Dravet Syndrome.

Maggie and Cora couldn’t ask for a better father, according to Marasco, as Chris cares for the two girls.

“He’s stepped up big time,” Marasco said. “I couldn’t be more proud of him.”

About 10 families in the Pittsburgh area are impacted by the syndrome, Kuhn said, who has also been a Dravet Syndrome Foundation ambassador since 2022.

She said part of the foundation’s mission is to fundraise and find a cure for Dravet Syndrome.

“I’m really glad Ian selected us, and we can continue our mission to share our story and other stories, so we can find a cure, and it can be in the past,” she said.

Mirror Staff Writer Colette Costlow is at 814-946-7414.