For the next three and a half years, Alice was treated conventionally and her condition remained stable. In winter 2007, she contracted a persistent respiratory infection that required several hospital admissions. Early in 2008, she was at home when her parents suddenly noticed her condition rapidly deteriorated. Her father remembers, “Alice all of a sudden turned very grey, her lips went silvery, and we knew this was bad.” They rushed Alice to the local hospital, where doctors diagnosed her with end-stage heart failure.
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