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Nicholas Volker
Nicholas Volker
Milwaukee Journal Sentinel

About Nicholas Volker

Nicholas Volker is both extremely unlucky, and lucky, at the same time. He is unlucky in that he is a boy, and therefore he has only one X chromosome. That would be OK, except that the XIAP gene on that single X chromosome has a mutation that prevents the XIAP protein from performing its normal function. He is unlucky in that this defective protein resulted in an aggressive bowel disease that did not respond to conventional medical treatments.

But on the other side of his lucky coin, Nic was born into a family that refused to accept that doctors could not diagnose and treat his illness. And as a result, after many doctor visits and hospital stays, Nic and his family were lucky to find themselves in the care of a team of physicians and translational researchers at the Medical College of Wisconsin. Nic is also lucky to have been born in 2005. Four years earlier, in 2001, the first human genome had been sequenced – – at a cost of ~ 600 million dollars. Nine years later, in 2010, when Nic was five years old and his doctors were running out of options to diagnose his disease, this DNA sequencing technology had developed to the point that a research team at the Medical College of Wisconsin's Human and Molecular Genetics Center were able to sequence his protein-coding genes. And as a result they were able to identify the single nucleotide change in one of his genes – literally one in a billion – that was responsible for his disease. And the rest is history – documented in the Milwaukee Journal Sentinel articles and videos linked below.

 
Nicholas Volker at home and school
Photo Galleries of Nicholas Volker

Milwaukee Journal Sentinal Story

Article 1: A Baffling Illness

Article 2: Sifting Through the DNA Haystack

Article 3: Gene Insights Lead to a Risky Treatment