- Associated Press - Monday, March 14, 2016

KANKAKEE, Ill. (AP) - Kory Kohler, a 16-year-old sophomore at Clifton Central High School, hasn’t forgotten his rough freshman year. His studies were interrupted when he spent nearly five months at the Ann & Robert H. Lurie Children’s Hospital of Chicago.

It was a complicated condition, called portal vein thrombosis. Its seriousness was obvious as he endured five major abdominal surgeries. He required more than 300 units of blood. Between December 2014 and April 2015, he wasn’t able to spend a full week at home.

He recovered enough to win his first stock car race during the summer at the Kankakee County Speedway. He improved enough to make the junior varsity basketball team this past season. But he’s still connected to Lurie’s.

“I was nominated for the Kids’ Advisory Board by several nurses and employees (people he met during his stay there last winter),” he explained. “They were looking for someone who knows what the process of living in the hospital for such a long time is like. They needed someone who was willing to put their thoughts and opinions out there. So I was chosen.”

The board meets once per month at Lurie’s. There are 12 high school-age former patients on the panel. Kory has the longest commute.



“Basically, say if there is a plan to add a floor to a building or change a food item on a menu, that would first have to get approved by the board of directors. And since this is a children’s hospital, some of the decisions come to us, too,” he said.

He offered some examples.

“When the hospital wanted to remodel one of the floors that used to be full of unused offices, our kids’ advisory board designed the colors and a complete layout of what we thought the floor should be like.

“And, just recently, a group came in and wanted to change the slogan of the hospital from ‘Where kids come first’ to ‘All, for your one’ and we gave them ideas of how to advertise this new slogan and how to get the word out there to us kids,” he said.

Lisa Mulvaney, a coordinator of the creative arts program at Lurie’s and a liaison to the advisory board, said Kory has the right stuff for his new assignment.

“We started this board in 2006,” she explained. “The idea is that we can go straight to a group of kids who know how our plans impact our patients. They have each had significant experiences here. They are willing to share their ideas and provide feedback on ours.”

Kory - the son of Darrin and Kelly Kohler, of Chebanse - admitted his board duties do sometimes complicate his attempt to return to his life at Central. He sometimes tries to do homework during the commute to Chicago for meetings. He has had to miss basketball practice to accommodate hospital obligations.

“Basketball was already a challenge for me this year,” he said. “I was much weaker than many of the other kids I faced, since I was sitting in a bed for four straight months while they were out living their lives and improving their skills.

“So since I wasn’t the most effective offensive player I focused mainly on my defensive skills. I took more charges this season than I scored points.”

Coach Tyler Finnegan noted Kory’s willingness to contribute in any way he could is a hallmark of 6-foot-1, 180-pounder’s overall attitude.

“If he stays healthy, who knows how good he can be next year,” Finnegan said. “I have just been amazed by his recovery. He rebuilt his strength. He’s still mentally tough. He’s dynamite to coach, but to think he was fighting for his life a few months ago, he’s a fantastic kid.”

And he’s a kid who can handle living a “double life.”

“Most kids at my school don’t really understand the impact our board makes on the hospital,” he said. “It’s hard to explain quickly while I’m in my way to a class or something, so I just explain to my friends that it’s like a student council in a way.

“They all understand, though, that I have a very different life than their’s. They all mostly live a sports and school life while I live a sports and school, and hospital life. And I top it all off with a racing life during the summer.”

Kory races in the four-cylinder division and his following in the tire tracks of his father and his uncle, track champ Don Hilleary.

“This racing season, I’ll be sticking with the (Saturn) station wagon and focusing mainly on some better finishes and hopefully, more feature wins,” he said. “Leaving the track with the reigning title of the last feature winner of the season is a good feeling to have and I would like to enjoy that feeling more in this season to come.”

He said he knows racing, school and basketball depend on his continued good health, so he’s staying in touch with his doctors, as well as working with the advisory board at Lurie’s.

“Lately, my health is doing great. I am recovering very well, and my Gortex shunt is still open allowing blood to flow through it, which is huge for me. I still go back to Lurie Children’s about once a month for various checkups and blood tests and such.”

Lurie’s is a 288-bed pediatrics-only hospital, averaging more than 10,000 admissions each year. In 2015, the staff there serviced more than 60,000 emergency room visits and 18,000 surgeries.

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Source: The (Kankakee) Daily Journal, https://bit.ly/1oKtdzn

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Information from: The Daily Journal, https://www.daily-journal.com

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