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Isaac Barchus is a sociable 10-year-old from Omaha, Nebraska. He has been coming to The Children’s Inn at NIH since he was two, when his mother, Kathe, a nurse, researched diligently to find answers for her son. “We didn’t know what was wrong and the doctors back home didn’t know what he had, so I started researching on my own,” she says. When Kathe emailed pictures of Isaac to the medical team at����and received an encouraging response, their journey began. His����doctors diagnosed Isaac with CANDLE syndrome, a disease that includes fevers, skin rashes, and developmental delays. Isaac was the first to enroll in a study to test an experimental drug, and although he has had his ups and downs, Isaac has been doing better overall.��

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