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ONE IN A BILLION by Mark Johnson

ONE IN A BILLION

The Story of Nic Volker and the Dawn of Genomic Medicine

by Mark Johnson & Kathleen Gallagher

Pub Date: April 12th, 2016
ISBN: 978-1-4516-6132-3
Publisher: Simon & Schuster

A dramatic chronicle of how a team of doctors and scientists collaborated to save the life of a young boy suffering from a rare genetic disease and, in the process, played an important part in launching personalized medicine.

In 2011, Johnson and Gallagher were members of the Milwaukee Journal Sentinel team that won the Pulitzer Prize for their reporting of the Nic Volker story. From the age of 22, Nic had been suffering from an inability to digest food properly. His intestines were being ravaged by tiny holes, and as a result, he suffered from repeated systemic infections. The dedicated doctors at the Children's Hospital of Wisconsin who were treating him were forced to remove his entire colon piece by piece, but after brief remissions, the infections persisted. Their tentative diagnosis was an unidentified autoimmune disease. By 2010, the doctors had run out of treatment options, with the possible exception of a bone marrow transplant. Nic was being kept alive mainly by intravenous feeding, and his death seemed imminent. Though the transplant remained the only treatment possibility, without a definite diagnosis, no surgeon would agree to perform the procedure. The doctors’ only remaining hope was to enlist the help of a team of researchers at the Medical College of Wisconsin who were studying the rat genome in order to identify correlations between genetic mutations and diseases such as high blood pressure. They hoped to discover that a mutated gene was causing Nic's problem; against all odds, they succeeded in the mammoth task of identifying a candidate gene. Nic received the transplant. Over time, his health improved, and he was able to resume a normal life. It’s an inspiring example of successful medical science told in a straightforward, easy-to-follow narrative.

The authors do a solid job integrating the personal stories of a wide cast of characters—Nic, his family, and the doctors and researchers involved with his treatment—with the exciting tale of a major medical milestone.