ST. JOHN | Hundreds came together Sunday on the Clark Middle School track for the Walk/Run for Kailey.
Scout troops, neighbors, classmates and strangers who just wanted to help pitched in to raise money for research into Niemann-Pick disease and to honor Kailey Florkiewicz.
Kailey, 9, is a Schererville girl who is battling the rare, degenerative disease dubbed “pediatric Alzheimer’s.”
“When we started organizing this, we said we’d be happy to get 100,” said Jessica Buikema, a friend of Kailey’s mother, Krissy, as she and three others registered walkers and runners. “We had 550 people who signed up online, and they keep coming.”
With the minimum sponsorship of $20 per participant, organizers knew they raised at least $11,000 for the National Niemann-Pick Disease Foundation Inc. One anonymous donor gave $1,000. The final tally of participants and funds was undetermined late Sunday.
“It’s an unbelievable turnout,” said Kailey's father, Roger Florkiewicz. “I was coming here and saw car after car turning in (to the school). I thought, ‘There must be something else here today.’”
The event also honored the memory of Muayad Issa, of Schererville, who lost his battle with Niemann-Pick disease Dec. 9. Both Type A, which Muayad had, and Type C, which affects Kailey, are genetically passed from parents, Roger Floriewicz said. Niemann-Pick disease has no cure.
Ryan Fejes, 8, attends class at Peiffer Elementary School in Schererville with Kailey’s younger sister, Kenzie.
“We do a lot of walks all the time,” said Ryan's father, Bob Fejes, who brought Ryan to the event. “It’s a family tradition. We walk for March of Dimes and the Hub Run in Crown Point every year.”
David and Patty Sharp have been neighbors of the Florkiewicz family for 19 years.
“This is just something we can do to help when things happen, when someone’s in need,” David Sharp said.
Elizabeth Ayersman, 15, of Dyer, and her cousin, John Hoehn, 23, of Chicago, participated in the Walk/Run for Kailey because of a family connection.
“Our grandmother is friends with Kailey’s grandmother,” Hoehn said.
The event also drew helpers from the region and beyond.
Logan Dawson, a graduate student at Purdue University, sold raffle tickets for the 50/50 raffle. One of Dawson’s college friends is a friend of the Florkiewicz family.
“It’s awesome, especially for something that friends put together,” he said.
At the finish line, Elena Blissmer, 12, waited to distribute fresh orange slices or what she called “smiley faces” to the participants. Her mother, Suzie Blissmer, was one of those who helped organize the Walk/Run for Kailey.
“It’s about helping other people, people who have Niemann-Pick disease,” Elena said, noting people with it rarely live into adulthood. “We want to help find a cure.”