FORTVILLE — A line of children made its way across the stage, some smiling widely, soaking in the crowd’s excitement while others hid timidly in their mothers’ shirttails or gazed wide-eyed from atop their fathers’ shoulders.
Each was small for their age, a sign of the rare chromosomal disorder they battle.
The crowd of onlookers scattered across the lawn cheered. At the two-day music festival and fundraiser, featuring dozens of bands from across the area, it was clear each brave patient had a faithful following. These children were the stars of the show.
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Kammy’s Kause, organizers said, exists to celebrate them.
Running nearly 15 years strong, the Fortville event that draws hundreds of music enthusiasts raises money for the national support group that aids the families of those with Wolf-Hirschhorn syndrome, more commonly called 4p- (pronounced four-p-minus) disorder, which causes mild to severe physical and mental handicaps.
The fundraiser’s namesake, 15-year-old Kamdyn Hiner of Fortville — who was among the children who took to the stage Saturday, waving and smiling out to the crowd — was born with the disorder and, like the others, is missing certain genetic material, causing developmental delays and other physical ailments.
Since its inception 14 years ago, Kammy’s Kause has raised upward of $320,000 for the support group, allowing its executive team to host annual conferences, dole out grants to families in need and fund research.
This year, Kamdyn’s family expected to raise around $60,000 from the two-day music festival, held in Fortville’s American Legion Park. Nearly 30 bands played throughout the weekend while vendors and food trucks lined the perimeter of the stage, many donating their time and profits to the cause.
A dozen families from across the country, whose children are affected by 4p-, came out for the weekend. It’s as much a family reunion for them as it is a fundraiser, they say; with so few people in the world impacted by the disorder, it’s nice to come together with those who truly understand its troubles and triumphs.
The 4p- disorder affects an estimated 1 in 50,000 babies born in the U.S. each year, according to the National Institute of Health. It causes both mental and physical developmental delays. Many patients have trouble gaining weight and muscle mass and are prone to seizures, heart defects and impaired balance and coordination.
Life expectancy varies greatly, according to the National Institute of Health. Some with the 4p- disorder survive to adulthood if they don’t contract other fatal conditions.
Kamdyn was diagnosed with 4p- in 2002 when she was a month old, her father, Jared Hiner, said. She was born at 37 weeks, weighing just 3 pounds. She lived in the hospital’s neonatal intensive care unit for a month while doctors monitored her progress. She was able to go home only after she’d reached 5 pounds, he said.
Amid a search for information and support after Kamdyn’s diagnosis, the family discovered the National 4p- Support Group, an Ohio-based nonprofit organization that exists to connect 4p- families about the country.
At the time, the organization had about an $800 annual operating budget, making it difficult for the group’s leaders to host the conferences and events they knew could bring families together, said Lynn Louden, Kamdyn’s grandmother.
And that inspired Kamdyn’s family to help.
They hosted the first Kammy’s Kause in 2004, Hiner said. A few local bands – mostly friends of Hiner’s — showed up to play while the family sold candy bars and soda pop out of a cooler, he said.
That first year, they raised $1,000, Hiner said. And though he hoped the event would grow, he never imagined it would become he force it is today.
Hiner said he takes great pride in the music festival, the volunteers who come out to help during the weekend, and he’s always pleased to see the same faces turning up year after year.
With tears in his eyes Saturday, he said the event serves as an important reminder of the great influence and love people with disabilities bring to the world. So many people, Hiner said, might look at a child like Kamdyn and think about how much easier her life would be if she were “normal.”
But in his mind, people should strive to be more like Kamdyn and others with 4p- disorder, Hiner said. They each have an unbreakable love and spirit, Hiner said. And more of that would make the world a better place, he added.
“This is what they have to offer the world,” he said. “To limit them is to limit society.”