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.