Kammy's Kause turns 10 

Jared Hiner was only 20 years old when he learned his first child - still in the womb - was shrinking.

Kamdyn "Kammy" Hiner was born just 37 weeks into her incubation. She weighed 3 pounds, 14 ounces and wasn't breathing. Her parents barely had time to meet her before she was whisked off to intensive care. Three weeks later, doctors gave Hiner the diagnosis.

Kammy was missing part of her fourth chromosome, resulting in a condition known known as 4p- or Wolf-Hirschhorn Syndrome. Worst-case scenario, she wouldn't survive. And if she did, she'd be in a vegetative state.

"Getting that kind of information at [that age] is kind of mind-blowing," Hiner said recently over beers at the Lockerbie Pub. "I wasn't really sure what to do."

He took Kammy home after a month-long hospital stay and did his best. Initially Hiner had to feed her with a syringe. She was so small she sounded like a kitten when she cried. Hope was hard to find.

"But day after day after day, she proved everybody wrong," Hiner said.

Doctors told him Kammy wouldn't talk. She talked. Kammy wouldn't walk. Eventually, she did. Kammy won't have a personality, they said. Hiner begs to differ.

"She's a rock star," Hiner said of his daughter, now 11. "She took the worst possible scenario that you could be given and made it this incredible thing."

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A single dad with custody early on, Hiner couldn't do it alone. He sought outside help, and found it through a national support group for parents of 4p- children. At that point only about one in 50,000 children had such a diagnosis. Even today, Hiner only knows of five in Indiana.

That's what made the support group so important. When Hiner joined, there were about 150 member families. With only a $25 annual fee, the organization couldn't even print a quarterly newsletter without going into debt. Being a musician and knowing many others locally, Hiner decided to stage a musical festival to raise money. Kammy's Kause was born.

The inaugural event was thrown together rather hastily. Hiner had to borrow the stage from a local high school. He still managed to raise $1,000, much more than the 4p- support group was used to having. That was 10 years ago.

Since that earnest debut, Kammy's Kause has earned more than $118,000, which has aided the support group and its members and funded 4p- research, including a first-ever worldwide gathering of such geneticists in Washington, D.C. The festival itself, this year on Aug. 23-24, is now a two-day event featuring about a dozen artists, a motorcycle ride, live and silent auctions and a children's zone.

"It's like a carnival when you walk in now," Hiner said of Kammy's Kause, which is held at the American Legion Campground off State Road 13 in Fortville. Admission is $5 per person and includes parking and camping.

Many of this year's artists have played it many times before, including Hiner's band Breakdown Kings. This will be Landon Keller's sixth year.

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"For me, there is this almost tangible feeling of joy and inspiration that exists every single year there that I can't wait to get back to," Keller wrote in an email. "Not to mention getting to hang out with and listen to a lot of local/regional musicians that I've come to know and love over the years. The camaraderie among musicians is unmatched. Both my band and my family truly look forward to it every single year."

As for Kammy, she's doing great. She's enrolled in a special needs program at school. Therapeutic horseback riding and music therapy have helped. Hiner considers Kammy to be on the milder end of the spectrum (many 4p- children require constant care).

"It just makes you appreciate it that much more," Hiner said. "It took so long to get there and took so much work. Now we revel in it on a much deeper level."


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