Cora Kuhn is a 5-year-old girl from Verona who loves Disney movies, singing and dancing.
She loves to swim in the summer, and play with friends.
And since she was just 5 months old, Cora has had 39 seizures that have lasted from as briefly as a few seconds to more than five hours, says her mom, Jen Marasco-Kuhn.
Cora was 9 months old when she was diagnosed with Dravet Syndrome, a rare and severe form of epilepsy affecting about 1 in 15,700 children.
She’s at increased risk of sudden unexpected death in epilepsy, which is the leading cause of premature mortality for those with Dravet syndrome.
“Any time she goes to sleep, there’s a chance she won’t wake up,” Jen said. “The stakes are high for us.”
Cora’s family had been nominated five times over the past four years to be recognized by Semper Gratus, a nonprofit supporting pediatric patients battling cancers, diseases and disabilities.
On Saturday, Cora, her mother, father, Chris Kuhn, and big sister, Maggie, 8, were the guests of honor for the group’s annual “Small Town Loud Voice” event at the West Leechburg Volunteer Fire Department’s recreation hall.
Ian Coyle, a Gilpin native now living in Shaler, is founder and president of Semper Gratus — Latin for “Always Grateful.” The five nominations for the Kuhn family came from people who didn’t know each other, he said.
“I took it as a sign,” he said.
In 11 years, Semper Gratus has raised more than $500,000, including $160,000 last year. Proceeds from this year’s event will go to the Dravet Syndrome Foundation and Blood Cancer United.
An ambassador for the Dravet Syndrome Foundation, Jen said she knows of 11 families within a three hour radius of Pittsburgh who have children with Dravet.
“We’re not going to stop until we find a cure, that’s the goal,” she said.
The day started with a morning “Shamrock Shuffle” 5K and 1-mile family walk, in which about 600 participated, Coyle said.
The evening event was sold out with 400 tickets sold in less than three weeks.
“This is a true testament to community,” Coyle said. “We’re nothing without it.”
Jean Byrnes, of Plum, was among those who had nominated Cora and her family. Her son, Joey Byrnes, 13, was the honoree in 2021, the year Cora was diagnosed. Joey had leukemia and is now cured.
“It is probably the most impactful night of our lives,” Byrnes said. “Ian is a phenomenal human being.”
Byrnes said she nominated Cora’s family because she’s afflicted with a disease people don’t understand.
“They’re going to battle for the rest of their lives,” she said.
Byrnes called Jen a “powerhouse mom.”
“She will not go down until everyone in this community understands what Dravet is,” she said.
The family was surprised with gifts and treats for Chris and Jen and for Maggie and Cora.
The biggest was that they will get an addition built onto their home that will house a sensory friendly room for Cora, who was recently diagnosed with autism.
“What we wanted to do was create a safe space in the comfort of their own home,” Coyle said.
The family was already grateful earlier in the evening, before being showered with gifts and love.
“This is like a validation for us special needs parents,” Jen said. “There’s no real road map for what we do. You never know if you’re making any of the right decisions.
“For us to be seen, that means people hear our stories, they hear our struggles and they want to amplify this cause.”