A baffling illness

Mike Johnson & Kathleen Gallagher:

Desperate for clues to a 4-year-old's gut-destroying disease, doctors wonder whether a pioneering DNA technique could help.

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.

Food has become his dream - and his curse. Severely underweight, he arrived at Children's Hospital of Wisconsin in 2007 with the bony arms and distended belly of a famine victim. Yet when he ate, unusual holes would open between his intestine and skin, causing feces to leak into a large wound in his abdomen.

Posted by Jim Zellmer at December 21, 2010 2:42 AM
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