![]() ![]() When Silva replied that Gg was at the pool, the woman advised Silva to get the little girl to NIH - and fast. Silva, who had learned of the event only that morning, was mingling with participants when a parent-advocate asked, “Where’s your daughter? Why isn’t she here?” Once a year, specialized neurology researchers and families affected by a constellation of rare neuromuscular disorders get together, a confab that is both supportive and aimed at furthering research. Woodward had taken Gg and her older brother Elian to the pool while Silva, hoping to meet researchers and network with knowledgeable parents, was attending a 2014 meeting at the Clinical Center, the research hospital on the grounds of the National Institutes of Health, a few miles from the family’s home. She believed that the couple’s long-running quest for a diagnosis of their daughter Gabriela, known as Gg (pronounced “Gigi”), then 7, hinged on the little girl’s presence. “You have to bring the kids here - right now,” Silva remembers insisting. ![]() Elena Silva gripped her cellphone, struggling to convey a sense of urgency to her husband, Brian Woodward, whose response was drowned out by the background din of a suburban Maryland swimming pool on a steamy July afternoon.
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