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Marisa Carney, 5, sits in a hospital room
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Marisa Carney, 5, sits in a hospital room awaiting a series of tests. Every three months, the Carney family makes the trip to the Children's Memorial Hospital in Chicago, one of the few places capable of treating and understanding the evolving symptoms of ROHHAD. (June 28, 2011)(Credit: Newsday / Alejandra Villa)

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Marisa: A little girl's fight to live

Marisa Carney has been diagnosed with rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation, or ROHHAD, an extremely rare childhood disorder that’s difficult to diagnose and treat.