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One in a Billion

The Story of Nic Volker and the Dawn of Genomic Medicine

About The Book

“A riveting scientific detective story” (The Washington Post) by two Pulitzer Prize–winning journalists who chronicle a young Wisconsin boy with a never-before-seen disease and the doctors who save his life by taking a new step into the future of medicine.

In this landmark medical narrative, Pulitzer Prize-winning journalists Mark Johnson and Kathleen Gallagher share the story of Nic Volker, the first patient to be saved by a bold breakthrough in medicine—a complete gene sequencing, aimed at finding the cause of an otherwise undiagnosable illness. At just two years old, Nic experienced a brief flicker of pain that signaled the awakening of a new and deadly disease, one that would hurl him and his family into a harrowing journey in search for a lifesaving cure. After his symptoms stump every practitioner, it becomes clear that Nic’s is a one in a billion case, a disease that no one has ever seen before.

As Nic and his family search for answers, the scientific community is racing to bring about the next revolution in medicine—translating results from the Human Genome Project to treatments for actual patients. At the forefront is the brilliant geneticist Howard Jacob, who starts a lab at the Medical College of Wisconsin. Then Nic’s head physician reaches out to Jacob with an unprecedented of idea. A disease like Nic’s is likely due to a rare mutation: if they could sequence his genes to try to find the mutation, the boy might live. Jacob doesn’t know if he can do it; Nic’s doctors don’t know if it will even work; and no one knows what else might lie in the Pandora’s Box of Nic’s genome. But they decide to try—and in doing so, they step into a new era of medicine.

One in a Billion is “a compelling story of a modern medical miracle—the first instance of personalized medicine” (Milwaukee Journal Sentinel) and the birth of a scientific revolution.

About The Authors

Mark Johnson is a health and science reporter at the Milwaukee Journal Sentinel, where he has worked since 2000. He was a member of the Journal Sentinel team that won the Pulitzer Prize for explanatory reporting on the Nic Volker story in 2011. He is also a three-time finalist for the Pulitzer Prize and has won numerous other awards for his reporting. He lives with his wife and son in Fox Point, WI.

Kathleen Gallagher is a business reporter at the Milwaukee Jour­nal Sentinel, where she has worked since 1993. She was a member of the Journal Sentinel team that won the Pulitzer Prize for explanatory reporting on the Nic Volker story in 2011. She was also part of a team that won the 2006 Inland Press Association award for explanatory report­ing. She lives with her husband and two children in Wauwatosa, WI.

Product Details

  • Publisher: Simon & Schuster (April 12, 2016)
  • Length: 256 pages
  • ISBN13: 9781451661347

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Raves and Reviews

“A riveting scientific detective story, enriched by thorough research and the kind of intimate access to key players that good journalists develop during years of dogged beat reporting. … The book’s greatest strength is its portrayal of the boldness of the team’s decision to sequence and analyze Nic’s genes, a foray into uncharted medical and ethical territory.”
—The Washington Post

"A compelling story of a modern medical miracle — the first instance of personalized medicine."
Milwaukee Journal-Sentinel

One in a Billion is as rare and compelling as its title suggests. Pulitzer Prize winners Mark Johnson and Kathleen Gallagher have written a stirring narrative that powerfully illuminates a promising new medical world.”
David Maraniss, author of Once in a Great City: A Detroit Story

"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. ... The exciting tale of a major medical milestone."
Kirkus Reviews

“The story of Nic Volker’s extraordinary diagnostic odyssey represents perhaps the single most exciting example of the vast potential of personalized genomic medicine. Mark Johnson & Kathleen Gallagher have followed every twist and turn in Nic’s genomic journey. One in a Billion reveals the fearlessness of the Wisconsin scientists who poured over Nic’s DNA seeking answers and the unwavering resolve of Nic and his family. Above all, Johnson & Gallagher show how one brave boy’s example offers a prescription for a revolution in healthcare.”
Kevin Davies, author of The $1,000 Genome and Cracking the Genome

“Key events can trigger a tsunami of interest in new technologies. The first Apple II in 1977 introduced us to the personal computer, the first web browser in 1993 introduced us to the Internet—and now we have the cure for little Nic Volker. Mark Johnson and Kathleen Gallagher do a heroic job of sweeping away the common misperception that useful human genetics lie only in the far off future. Well, the future is now! The tale of charming Nic will move you and perhaps make you a passionate advocate for this new technology.”
George Church, co-author of Regenesis and Professor of Genetics, Harvard University

“The story of the first human being whose life was saved by genome sequencing is riveting, a veritable tour de force by Johnson and Gallagher. But the narrative goes well beyond this one remarkable boy—this is medicine’s future.”
—Eric Topol, author of The Patient Will See You Now and Professor of Genomics, The Scripps Research Institute

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