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. Read more...
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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. "
Publishers Weekly® Reviews
- Reviewed in: Publishers Weekly, page .
- Review Date: 2016-05-16
- Reviewer: Staff
In this engrossing book, journalists Johnson and Gallagher expand on the story of Nic Volker, the subject of the reportage for which their Milwaukee Journal Sentinel team won a 2011 Pulitzer Prize. In 2003, an international consortium of scientists finished sequencing the human genome, a process that took more than seven years and cost more than $600 million (by 2015, the cost had dropped to less than $1,000 and took only a few hours). Volker, a toddler, was among the first patients to benefit from genome sequencing and the first to capture the hearts of the general public. Volker's intestines had been "ravaged" by tiny fistulas. As the ailment was unlike anything doctors had seen before, it was clear the standard method of testing for genetic mutations—gene by gene, via hugely expensive tests—would not suffice. By sequencing all 21,000 or so of his genes, investigators sussed out the right one—a gene known as "XIAP"—and alerted Volker's parents and doctors that they'd chosen the right treatment (a bone marrow transplant). This is a moving, skillfully written book that's well positioned to introduce a broad audience to the profound clinical relevance of whole-genome and exome sequencing. Agent: Flip Brophy, Sterling Lord Literistic. (Apr.)