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In this Dec. 10, 2017 photo provided by the family, Jon and Kari Kilquist sit with their children, from left, Will, Emmy and Owen at their home in Murphysboro, Ill. Will was born with a long list of mysterious symptoms that require a wheelchair, feeding tube and other care but his doctors were stumped at the cause. A new national network that tackles the rarest of rare diseases finally gave his family a diagnosis, finding he was the only known patient in the world _ so far _ to harbor a particular gene mutation that caused his health problems. (Kilquist Family via AP)

In this Dec. 10, 2017 photo provided by the family, Jon and Kari Kilquist sit with their children, from left, Will, Emmy and Owen at their home in Murphysboro, Ill. Will was born with a long list of mysterious symptoms that require a wheelchair, feeding tube and other care but his doctors were stumped at the cause. A new national network that tackles the rarest of rare diseases finally gave his family a diagnosis, finding he was the only known patient in the world _ so far _ to harbor a particular gene mutation that caused his health problems. (Kilquist Family via AP)

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