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When my daughter Eliza landed unexpectedly in the NICU the day after she was born, I felt as though the floor had dropped out from underneath me. I was overwhelmed, crippled by fear and exhaustion. We had not planned for a five-week hospital stay, and we had not planned for the rare chromosomal diagnosis we received when we were there: Prader-Willi syndrome. Before her first birthday, Eliza was hospitalized seven times, undergoing two surgeries, and coming home from various stays with supplemental oxygen and a feeding tube.