Don't miss this. First of three parts ran Sunday. From our friend Mark Johnson and Kathleen Gallagher: 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.
For two years he has suffered from this mysterious illness. He has survived more than 100 trips to the operating room. He has endured gut pains so severe he asked his mother to pray for him. Surgeons have removed his colon, its pink hue discolored by an enormous yellow ulcer.
The disease is relentless. Mayer and the other doctors have never seen anything like it. They have been unable to find another doctor anywhere who has observedthe boy's affliction. Nor have they found the disease among millions of entries in the medical literature.
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