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One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine

e-book


ā€œA riveting scientific detective storyā€ (The Washington Post) by two Pulitzer Prizeā€“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 medicineā€”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 Nicā€™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 medicineā€”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 Nicā€™s head physician reaches out to Jacob with an unprecedented of idea. A disease like Nicā€™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 doesnā€™t know if he can do it; Nicā€™s doctors donā€™t know if it will even work; and no one knows what else might lie in the Pandoraā€™s Box of Nicā€™s genome. But they decide to tryā€”and in doing so, they step into a new era of medicine.

One in a Billion is ā€œa compelling story of a modern medical miracleā€”the first instance of personalized medicineā€ (Milwaukee Journal Sentinel) and the birth of a scientific revolution.