December 4, 2013

Slices of Life: Genetic disorder means daily battle with calculated risks

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By Megan Graham — In his old room in his parents' home, a pretty house in the Cherry Hills subdivision of Champaign, Chike Coleman is poking through his shelves. He wants to find a Blu-ray disc, one of the beloved movies he bought in a half-off online sale from a site that sells independent films.

He moves aside tens of his prized jazz CDs, the Soapbox Derby trophies and the Hardy Boys books. The shelves are filled with 25 years of memories: books he has loved, model cars done in candy-colored lacquer, his University of Illinois diploma.

His high school and college friends — most 25-year-olds, for that matter — no longer live in the dust of their boyhood belongings. But after his fleeting years of collegiate freedom, Chike moved right back into this room, with its boxes of waterproof dressing and nonstick pads and bandages, bottles of hydrogen peroxide, soap-free cleanser and Clindamycin gel.

"It's just kind of waiting," he says. "Just like everybody else. Except your wait feels a lot shorter than everybody else's."

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This story was written by a University of Illinois journalism student in Professor Walt Harrington’s Literary Feature Writing class taught in collaboration with The News-Gazette. Funding for the class, which was taught at the newspaper’s headquarters in downtown Champaign, came from the Marajen Stevick Foundation. The story was part of an occasional series titled “Slices of Life” that ran in the newspaper’s Sunday Living section. All the stories in the series are also collected in the book “Slices of Life.”