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."
Chike glances at a photograph of him leaning back casually in his wheelchair, royal blue graduation gown draping his chest as he smiles broadly. He looks normal. He looks healthy.
Yet these are two things Chike will never be.
***
Chike pronounced Chee-kay was born with a rare genetic disorder: chronic granulomatous disease, an immune deficiency that hinders his body from fighting off fungal and bacterial infections.
The condition was once called "fatal granulomatosus of childhood." But with medical progress vaccines, surgical abscess drainage and better medicines it is no longer necessarily fatal. One victim lived to be 63. Four out of five sufferers, of which there are only about 1,200 in the country, are boys. Many never live to become men.
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Genetic disorder means daily battle with calculated risks