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Emerson, age 1

Kansas City, Missouri

At a few weeks old Emerson went to see her pediatrician due to a distended belly. A liver biopsy soon followed which uncovered liver damage. Emerson wasn't gaining weight and she had a NG tube for a few months. In November 2016, Emerson was diagnosed with NPC. 


Today Emerson has no neurological signs and loves playing at the park with her big sisters. She has started to walk and travels to the NIH every 12 months to be monitored, as well as seeing her local team of doctors every 6 months. Emerson is holding on to hope for a cure so she can grow into the strong and healthy girl she is today!

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