The breathtaking story of a young boy with a never-before-seen disease, and the doctors who take a bold step into the future of medicine to save him—based on the authors’ Pulitzer Prize–winning reporting.

In this landmark medical narrative, in the tradition of The Immortal Life of Henrietta Lacks and The Spirit Catches You and You Fall Down, Pulitzer Prize–winning journalists Mark Johnson and Kathleen Gallagher chronicle the story of Nic Volker, the Wisconsin boy at the center of a daring breakthrough in medicine—a complete gene sequencing to discover the cure for an otherwise undiagnosable illness. At just two years old, Nic experienced a searing pain that signaled the awakening of a new and deadly disease, one that would hurl Nic and his family up against the limits of modern medicine.

For years, through false starts and failed cures, Nic holds on to life, buoyed up by his mother’s fierce drive to get him the care he needs. But when even the world’s experts are stumped by Nic’s illness, his doctors come up with a radical, long-shot plan: a step into the unknown.

The next major scientific frontier, following the completion of the Human Genome Project, was to figure out how to use our new knowledge to save lives—to bring genomic or personalized medicine into reality. It’s a quest that is undertaken by researchers around the world. But it is only when geneticist Howard Jacob hears about young Nic that the finish line finally comes into sight: It’s no longer a race to make history. It’s a race to save this boy’s life.

One in a Billion is an unforgettable tale of the lives that converged to launch a medical revolution. As pioneering geneticist Mary-Claire King pronounced upon learning Nic’s story: “It was as if one had heard about Case Zero of AIDS and the cure, all at once.”

To purchase the book on Amazon One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine

For more of Nic’s Journey: One In A Billion: A boy’s life, a medical mystery

 

Amylynne Santiago Volker

Founder, Nicholas Volker One in a Billion Foundation

Advisory Board Member, Rare & Undiagnosed Network

Advocate for her son, Nic Volker

Patient Advocate, Public Speaker, Charity Contributor

As Nic battled a life-threatening, mysterious illness over the course of several years, it was in part Amylynne’s unrelenting pursuit of answers & tireless advocacy for her son that led to the historic sequencing of his DNA &, ultimately, the bone marrow transplant that saved his life. The Volker family lives in Monona, Wisconsin, where 9-year-old Nic continues to struggle with the far-ranging effects of his illness and recovery. In addition to caring for her family, Amylynne works to spread a message of fortitude & faith on issues pertaining to children’s health. She has spoken at such events as The MCW Digestive Disease Center 2011 Healthcare Dinner, w/ former First Lady Laura Bush, 2011/12 BioForward Conferences in WI, has been a guest speaker @ Roche Pharma meetings 2012/13 & participated as a panel member w/ the team of Pulitzer Prize Winning Journalists from the Milwaukee Journal Sentinel @ Wisconsin 2013 Newspaper Assoc. Associated Press Convention & Trade Show. She has also been a frequent contributor & speaker for events & radio-a-thons that benefit Ronald McDonald House Charities, CHW & Make A Wish, has appeared in several Capital Campaign fundraiser videos aired in movie theatres & on television in & around the Greater Milwaukee area. Amylynne & her son Nic have appeared on National TV including the Today Show, A syndicated medical show on ABC, PBS NOVA & Japanese Network Nippon( 2013), have been the subject of dozen’s of news articles around the world & most recently in U.S. World News Reports. Amylynne & Nic are featured in a E book on Rare Diseases (2/28/14) to help other families with sick children & a book being written about Amylynne and Nic’s historical medical journey will be published by Simon and Schuster.