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One in a billion: A boy's life, a medical mystery

The Journal Sentinel, December 20, 2010

On a Saturday morning in June, when his children are at piano lessons and the Whitefish Bay house is quiet, pediatrician Alan Mayer composes the e-mail he hopes will persuade a colleague to try a costly new technology. He has been shaping the argument in his mind - the chance to take the first steps into the future of medicine and maybe save the life of a very sick little boy.

"Dear Howard - I hope you are well," he writes, addressing Howard Jacob, director of the Medical College of Wisconsin's Human and Molecular Genetics Center. "I'm writing to get your thoughts on a patient of mine . . . "

Nicholas Volker is a short, blue-eyed4-year-old who loves Batman and squirt gun fights and steak - on the rare occasions when he's not restricted to a feeding tube.

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