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One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine
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.”
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.”
257 pages, Kindle Edition
First published May 17, 2016
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Displaying 1 - 30 of 43 reviews
June 21, 2016
A boy was dying. A 2-year-old named Nic Volker weighed less than some 6-month-olds. Holes formed on his bottom, stool was leaking, and the doctors couldn’t stop it.
Nothing in the medical literature described what was happening to Nic. After four years of barely staving off death, the doctors tried a Hail Mary, something never done before. They scanned Nic’s genes in search of a diagnosis.
“One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine” is the unique medical narrative book that does more than lay out one case study devoid of context. Authors Mark Johnson and Kathleen Gallagher composed a fast-paced narrative that interweaves science, ethics and insight into the behemothic bureaucracy of hospital care.
The authors won a Pulitzer Prize for Explanatory Reporting in 2011 for their series in the Milwaukee Journal Sentinel about this case. It drew fame in the medical community, posing new questions about the limits of diagnostic medicine and the ethics of studying patients’ genes.
The newspaper stories were similarly fast-paced and emotional, but the book does more. It lays out how genomic medicine — sequencing a patient’s genes for medical purposes — is being used across the country, where it’s failing to live up to expectations and how this one case set the ethical standard for informing patients about genetic mutations.
When doctors scan your genes, they find not only diseases you may one day contract, they also might find your siblings’ genetic mutations. Should they know if they have a treatable disease like breast cancer? What about the incurable, like Parkinson’s?
I struggle with medical stories. I never took anatomy, and I barely passed science for liberal arts in college. Yet I read “One in a Billion” in days.
Johnson and Gallagher explain the science in narrative scenes, using action to explain concepts like how DNA shapes our lives.
From the beginning, they also develop the cast of characters with distinct descriptions that make it easy to keep each doctor apart. They shift perspective often, showing how Amylynne and Sean Volker respond to their son’s illness but also how the many doctors and researchers struggle to find an answer.
The authors do the seemingly impossible: They explain the bureaucracy of hospitals. Amylynne believes she’s protecting her son by demanding only her hand-picked doctors. One of his doctors, Alan Mayer, believes she is compromising her son’s care by alienating staff, to the point that some no longer feel motivated to fight for Nic.
Doctors and nurses are not two-dimensional heroes. Some resent Amylynne for her demands. Some refuse treatment in part out of a fear of being blamed if it doesn’t work. Everyone is human and presented in their humanness. Amylynne and Sean’s marriage struggles. Nic’s siblings don’t understand their mother’s absence.
The chapters are mercifully short, often five to six pages, which allow the authors to avoid a glut of too much information. Some narrative journalists linger on only a few scenes long after the point where anything interesting has happened. Here, instead, the authors choose many scenes that present action, conflict and character development, but last only a few pages. Nic is brought into an intensive-care unit. The authors show he’s dying and why. The doctors pump him with antibiotics — “a shotgun, not a rifle,” the doctor says of the medicines — then the attention shifts to Nic’s tempestuous recovery through his mother’s emotional journals. The authors know there’s no need to linger for 20 pages on this one scene.
The authors could have shown off their five years of work and been praised for a hefty book that dives deep into the groundbreaking science. But they aim to reach not just readers of the New England Journal of Medicine but also fans of “General Hospital.”
This is a book that explains the past, present and future of medical care, and it gives hope that this new science might provide more definitive diagnoses and new treatments.
Nothing in the medical literature described what was happening to Nic. After four years of barely staving off death, the doctors tried a Hail Mary, something never done before. They scanned Nic’s genes in search of a diagnosis.
“One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine” is the unique medical narrative book that does more than lay out one case study devoid of context. Authors Mark Johnson and Kathleen Gallagher composed a fast-paced narrative that interweaves science, ethics and insight into the behemothic bureaucracy of hospital care.
The authors won a Pulitzer Prize for Explanatory Reporting in 2011 for their series in the Milwaukee Journal Sentinel about this case. It drew fame in the medical community, posing new questions about the limits of diagnostic medicine and the ethics of studying patients’ genes.
The newspaper stories were similarly fast-paced and emotional, but the book does more. It lays out how genomic medicine — sequencing a patient’s genes for medical purposes — is being used across the country, where it’s failing to live up to expectations and how this one case set the ethical standard for informing patients about genetic mutations.
When doctors scan your genes, they find not only diseases you may one day contract, they also might find your siblings’ genetic mutations. Should they know if they have a treatable disease like breast cancer? What about the incurable, like Parkinson’s?
I struggle with medical stories. I never took anatomy, and I barely passed science for liberal arts in college. Yet I read “One in a Billion” in days.
Johnson and Gallagher explain the science in narrative scenes, using action to explain concepts like how DNA shapes our lives.
From the beginning, they also develop the cast of characters with distinct descriptions that make it easy to keep each doctor apart. They shift perspective often, showing how Amylynne and Sean Volker respond to their son’s illness but also how the many doctors and researchers struggle to find an answer.
The authors do the seemingly impossible: They explain the bureaucracy of hospitals. Amylynne believes she’s protecting her son by demanding only her hand-picked doctors. One of his doctors, Alan Mayer, believes she is compromising her son’s care by alienating staff, to the point that some no longer feel motivated to fight for Nic.
Doctors and nurses are not two-dimensional heroes. Some resent Amylynne for her demands. Some refuse treatment in part out of a fear of being blamed if it doesn’t work. Everyone is human and presented in their humanness. Amylynne and Sean’s marriage struggles. Nic’s siblings don’t understand their mother’s absence.
The chapters are mercifully short, often five to six pages, which allow the authors to avoid a glut of too much information. Some narrative journalists linger on only a few scenes long after the point where anything interesting has happened. Here, instead, the authors choose many scenes that present action, conflict and character development, but last only a few pages. Nic is brought into an intensive-care unit. The authors show he’s dying and why. The doctors pump him with antibiotics — “a shotgun, not a rifle,” the doctor says of the medicines — then the attention shifts to Nic’s tempestuous recovery through his mother’s emotional journals. The authors know there’s no need to linger for 20 pages on this one scene.
The authors could have shown off their five years of work and been praised for a hefty book that dives deep into the groundbreaking science. But they aim to reach not just readers of the New England Journal of Medicine but also fans of “General Hospital.”
This is a book that explains the past, present and future of medical care, and it gives hope that this new science might provide more definitive diagnoses and new treatments.
January 6, 2019
What an inspiring, tear-jerking, and fascinating story. Diving into (at least the surface level of) genomics, this is the story of the first publicised usage of genomics in the treatment of a patient. It is a harrowing story of one mother's determination to do whatever it takes to save her young son from an ailment that has stumped the best in Western medicine. While the story was page-turning, I got caught up a bit in the writing, hence the four stars instead of five. Still definitely worth the read.
February 4, 2022
An excellent story of science, discovery, families, and emotions. I'm not sure what to think of Amylynne and how she dealt day to day with Nic's illness, the hospital and doctors and being a mother and wife. I cannot judge her. One of the biggest thing I learned during Lydia's very short Hospital stay of two and a half months is that I have no clue what other people are dealing with and how they are equipped to deal with it. I can only know myself. And I can only judge myself.
The entire way through this book I kept thinking of Lydia and her genetic disorder and what we have been thru. I don't believe that any of Lydia's treatments would have changed had we not known the genetic deletion existed. I do think her care after the "fix" or "cure" will be better and more thorough and more careful for the rest of her life because of it. Of that I am grateful and extremely scared because her illness is forever with her. I can only imagine when Nic has a stomach ache what the family must think and all the thoughts that must run through their mind about his previous illness.
My husband and I did not have our own DNA checked for Lydia's genetic disorder. There's about an 80 to 90% chance that it just happened and a very small chance that one of us gave it to her. Neither of us wanted the guilt or the blame or the sorrow that could go along with that. That doesn't mean I don't think about "what if it was me?" that part really doesn't matter. It changes nothing. What matters if we have a beautiful daughter that we enjoy more than we can put into words.
After what the Volker family went through during the first young years of Nick's life I can only imagine how Overjoyed they are everyday just see him smiling and walking and playing and living.
The entire way through this book I kept thinking of Lydia and her genetic disorder and what we have been thru. I don't believe that any of Lydia's treatments would have changed had we not known the genetic deletion existed. I do think her care after the "fix" or "cure" will be better and more thorough and more careful for the rest of her life because of it. Of that I am grateful and extremely scared because her illness is forever with her. I can only imagine when Nic has a stomach ache what the family must think and all the thoughts that must run through their mind about his previous illness.
My husband and I did not have our own DNA checked for Lydia's genetic disorder. There's about an 80 to 90% chance that it just happened and a very small chance that one of us gave it to her. Neither of us wanted the guilt or the blame or the sorrow that could go along with that. That doesn't mean I don't think about "what if it was me?" that part really doesn't matter. It changes nothing. What matters if we have a beautiful daughter that we enjoy more than we can put into words.
After what the Volker family went through during the first young years of Nick's life I can only imagine how Overjoyed they are everyday just see him smiling and walking and playing and living.
February 8, 2017
A real page-turner. I burned through this in two days because I was so lost in the intertwined tale of a young, desperately ill boy and the dawn of genetic sequencing as a diagnostic tool. If it doesn't sound exciting, it's only because I can't bring the same sense of urgency to it that the Pulitzer-prize winning authors do. It may help that the remarkable story is set in and around my neighborhood (the Madison-Milwaukee area of Southern Wisconsin). This truly remarkable book pays homage to both the incredible and harrowing survival story of young Nic Volker and the equally fascinating, race-against-time story of science pushing the limits of technology to save his life.
Pick this one up and read it!
Pick this one up and read it!
February 21, 2022
Shed a tear. Not too draggy. It was fun seeing my lessons as a biology undergraduate being applied in a medical setting.
(Onward is a personal comment unrelated to the authors lol)
I was about to end the book in good spirits until James Watson butt his head into this beautiful story going ““In 1951, I saw that X-ray picture of DNA. I was in Naples. I decided I was going for it.” Going for what james? Plagiarism? Taking your male priviledge for a walk? Also who’s X-ray picture of the DNA Helix was that? Half a decade later and you still refuse to name Rosalind Franklin.
This one quote drove me into a 3am anger driven rant about Watson and Crick. I didnt even know Jamesy was still alive! God he’s 93!!
(Onward is a personal comment unrelated to the authors lol)
I was about to end the book in good spirits until James Watson butt his head into this beautiful story going ““In 1951, I saw that X-ray picture of DNA. I was in Naples. I decided I was going for it.” Going for what james? Plagiarism? Taking your male priviledge for a walk? Also who’s X-ray picture of the DNA Helix was that? Half a decade later and you still refuse to name Rosalind Franklin.
This one quote drove me into a 3am anger driven rant about Watson and Crick. I didnt even know Jamesy was still alive! God he’s 93!!
February 28, 2017
Though a fascinating story, I left the book unconvinced that the gene testing was truly the source of saving Nic's life. It seemed that he may have been approved for a marrow transplant anyways with a little more pushing, and that the genetic testing only showed a disease that may manifest itself in several years and was unrelated to the symptoms that Nic was experiencing. Not a complete explaination for what Nic had been going through. It wasn't the super-solid science I had been hoping for. Interesting story, but fell down for me on the conclusion.
November 3, 2016
Outstanding! Not only does the book put genetic research in a very human context, it does so in a compelling manner and in language that is accessible to those of us who are not scientists.
June 11, 2023
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TRUE STORY OF A SMALL BOY WHO IS THE FACE OF A NEW KIND OF MEDICINE
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"In [a] small Madison [Wisconsin] suburb...a medical mystery is playing out inside the gut of a small boy.
It begins innocently enough one fall morning in 2006, when a mother goes to dress her son in swim trunks at a water park and notices a patch of red, swollen skin on his bottom."
The above quote (in italics) is essentially the beginning of this medical mystery and is the basis of this riveting book that describes the story of the first human being (Nicholas "Nic" Volker, born October 2004) whose life was saved by personalized genomic medicine. This book is co-auhored by two Pulitzer Prize-winning journalists, Mark Johnson and Kathleen Gallagher, both of whom have won numerous awards for their reporting.
(A genome is all the DNA within a single cell of an organism. Genomics is a discipline that applies various DNA processes to analyze the function and structure of genomes. Genomic medicine is an emerging discipline that involves using genomic information about a person as part of their clinical care.)
This book covers the years from 1993 to 2015.
The authors have detailed every twist and turn in Nic's medical odyssey. The science is well-explained and most technical words are explained in the main narrative. Biographies of the main chaacters involved in this story are also given.
How can you be sure everythng in this book is accurate? Answer: to get the raw, immediate, and complete material for this book, the authors were allowed to access Nic's mother's online journal that chronicled Nic's years in the hospital. As well, they had access to the doctors and nurses who cared for Nic and the scientists who "read" or sequenced his genetic script.
I counted the number of people interviewed for this book to be a staggaring 82.
The number of chapters in this tome is 23. Humans have 23 pairs of chromosomes that contain our essence, the DNA that makes us who we are. I'm not sure if this was done intensionally but I thought it was a nice touch.
Note that the winding staircase on the book's front cover, shown above by Good Reads, depicts the structure of DNA.
Finally, two things could have improved this book: a glossary and illustrations (pictues, diagrams, etc.). Even though most of the technical words are defned in the main narrative, I think a glossary would have been most beneficial. There is only one black and white picture. I would have liked to see diagrams in this book to aid in explaining major DNA concepts. As well, pictures of the main people of interest in this important story would have added considerably to it.
In conclusion, this is a landmark medical story that tells the incredible tale of the lives that converged to launch a medical revolution! This book portrays science and medicine at their best!!
XXXXX
(2016; 23 chapters; main narrative 200 pages; acknowledgements; notes; sources; index; about the authors)
XXXXX
TRUE STORY OF A SMALL BOY WHO IS THE FACE OF A NEW KIND OF MEDICINE
XXXXX
"In [a] small Madison [Wisconsin] suburb...a medical mystery is playing out inside the gut of a small boy.
It begins innocently enough one fall morning in 2006, when a mother goes to dress her son in swim trunks at a water park and notices a patch of red, swollen skin on his bottom."
The above quote (in italics) is essentially the beginning of this medical mystery and is the basis of this riveting book that describes the story of the first human being (Nicholas "Nic" Volker, born October 2004) whose life was saved by personalized genomic medicine. This book is co-auhored by two Pulitzer Prize-winning journalists, Mark Johnson and Kathleen Gallagher, both of whom have won numerous awards for their reporting.
(A genome is all the DNA within a single cell of an organism. Genomics is a discipline that applies various DNA processes to analyze the function and structure of genomes. Genomic medicine is an emerging discipline that involves using genomic information about a person as part of their clinical care.)
This book covers the years from 1993 to 2015.
The authors have detailed every twist and turn in Nic's medical odyssey. The science is well-explained and most technical words are explained in the main narrative. Biographies of the main chaacters involved in this story are also given.
How can you be sure everythng in this book is accurate? Answer: to get the raw, immediate, and complete material for this book, the authors were allowed to access Nic's mother's online journal that chronicled Nic's years in the hospital. As well, they had access to the doctors and nurses who cared for Nic and the scientists who "read" or sequenced his genetic script.
I counted the number of people interviewed for this book to be a staggaring 82.
The number of chapters in this tome is 23. Humans have 23 pairs of chromosomes that contain our essence, the DNA that makes us who we are. I'm not sure if this was done intensionally but I thought it was a nice touch.
Note that the winding staircase on the book's front cover, shown above by Good Reads, depicts the structure of DNA.
Finally, two things could have improved this book: a glossary and illustrations (pictues, diagrams, etc.). Even though most of the technical words are defned in the main narrative, I think a glossary would have been most beneficial. There is only one black and white picture. I would have liked to see diagrams in this book to aid in explaining major DNA concepts. As well, pictures of the main people of interest in this important story would have added considerably to it.
In conclusion, this is a landmark medical story that tells the incredible tale of the lives that converged to launch a medical revolution! This book portrays science and medicine at their best!!
XXXXX
(2016; 23 chapters; main narrative 200 pages; acknowledgements; notes; sources; index; about the authors)
XXXXX
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July 1, 2023Kathleen Gallagher ’81
Coauthor
“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.
Coauthor
“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.
February 1, 2020
Relatively well explained and clear. The authors couldn't resist however the temptation of giving each character a superhero landing pose in several chapters, which feels very artificial every single time I read it. Somehow though, the characters of this real life drama were unlikable to me. From the nurse that advised the mother to have a breast reduction surgery in order to be taken seriously by the doctors ( how was that person not fired?) to the overprotective mother who was quick to decide her child's genetic sickness could not have possibly come from her, to the doctors who were sometimes portrayed as making decisions for their patient without bothering to inform the parents. I do applaud the authors for opting to detail what happened to the family once they had a diagnosis for Nick's disease. It was rather brave to describe how the family nearly fell apart. It also opened a very interesting conversation for me: is it really best to put all the effort into saving a very sick young boy, while completely ignoring the rest of the family? Were the repercussions on the family 100% justified? Should we ignore our loved ones in the pursuit of saving one loved one? And is it really that easy to accept what genetic sequencing might reveal once the urgency of death is no longer upon us? Of course this book did not try to deal with those topics, but they might be interesting to explore in a different work.
At the end of it, it didn't seem like we learned enough from this story. This type of genetic medicine is not available to the masses, only the select few with the financial resources can afford it. I feel like this book unnecessary glamorizes genetic medicine, which doesn't necessarily offer a lot of solutions, not even for the people to whom it's available.
At the end of it, it didn't seem like we learned enough from this story. This type of genetic medicine is not available to the masses, only the select few with the financial resources can afford it. I feel like this book unnecessary glamorizes genetic medicine, which doesn't necessarily offer a lot of solutions, not even for the people to whom it's available.
February 16, 2020
Two overlapping stories. One was the story of a pre-school boy in a Wisconsin family. The other was development of background of physicians and scientists who were finally able to diagnose his condition. At first the text used short chapters about the difficulties that the boy's family had getting him relief from his pain and getting a solid diagnosis interleaved with chapters about young scientists starting out in human genetics and the concurrent advancement of the science. As the boy's disease continued the chapters about him got longer and I began to feel sad and join the family's frustration with the impotence of medicine. In the physician's desperate search for a diagnosis, they asked for help from the geneticists knowing that the technology was not expected to be ready. The geneticists sequenced the boy's entire exome, found the atypical gene and tested that the product of the defective gene produced harm in vitro. This led to a bone marrow transplant and a cure for the boy. The authors also described critical comments about the science leading to the bone marrow transplant in a way that was illuminating. Recommended for those who can read about the years of suffering of a pre-school boy knowing that the book has a happy ending.
December 25, 2023
One In A Billion by Mark Johnson and Kathleen Gallagher is a story of hope. The hope stems from the relatively new technology of genome sequencing applied to medicine. I bought this book for two reasons: its subject matter and its locale. Genetics is fascinating, even though it is a cutting-edge field, with Jurassic Park a pie-in-the-sky dream. Furthermore, it takes place in Wisconsin, and local science is remarkable. It fills me with pride.
Johnson and Gallagher open by telling the story of Nic Volker, a young boy with a mysterious disease. No one knows what it is, but the symptoms are dire. Young Volker cannot eat. His mother is his greatest asset, tirelessly fighting to read every medical journal and understand the newest science. We meet the members of his medical team and the people populating Milwaukee's Medical College of Wisconsin. We learn all about DNA and how scientists understood its language.
The book has a timeline and jumps around. We start with Volker and move on to the late 1980s when genome sequencing began to be feasible. The book's copyright is in 2016, so I imagine the cost of sequencing a disease diminished slightly since then.
I enjoyed the book. Thanks for reading my review, and see you next time.
Johnson and Gallagher open by telling the story of Nic Volker, a young boy with a mysterious disease. No one knows what it is, but the symptoms are dire. Young Volker cannot eat. His mother is his greatest asset, tirelessly fighting to read every medical journal and understand the newest science. We meet the members of his medical team and the people populating Milwaukee's Medical College of Wisconsin. We learn all about DNA and how scientists understood its language.
The book has a timeline and jumps around. We start with Volker and move on to the late 1980s when genome sequencing began to be feasible. The book's copyright is in 2016, so I imagine the cost of sequencing a disease diminished slightly since then.
I enjoyed the book. Thanks for reading my review, and see you next time.
March 6, 2019
As a medical student, I found this book familiar to my field of study and genetics is one of my favourites. Howard Jacob is a remarkable figure for his discovery for Nic Volker's Illness.
This book is about a boy who suffers Intestinal Ulcers whenever he eats. The disease is so severe that he has to take IV fluids for his life. After more than 600 days in a hospital, with hard times in Family issues, Amylyne Walker, his mother is praying to God for his son's recovery. This story is not fiction but you might find this really thrilling and rivetting. I won't write what cures and how doctors, scientists went through to get a diagnosis and cure this poor little boy in order to avoid spoilers.
Enjoy!!
This book is about a boy who suffers Intestinal Ulcers whenever he eats. The disease is so severe that he has to take IV fluids for his life. After more than 600 days in a hospital, with hard times in Family issues, Amylyne Walker, his mother is praying to God for his son's recovery. This story is not fiction but you might find this really thrilling and rivetting. I won't write what cures and how doctors, scientists went through to get a diagnosis and cure this poor little boy in order to avoid spoilers.
Enjoy!!
May 13, 2020
An informative and interesting look at the history of whole exome sequencing, made more so for me as it puts things into place timeline wise in relation to my career as a genetic counsellor. I recall in training doing microarray on everyone and then in practice the advent of exome and the adjustments to the consent and counselling process. It was nice to see that a genetic counselor was part of this history, and probably because of that I found the last bit of the book more compelling as it touched on the counselling bit.
A decent listen, good for anyone interested in how exome sequencing really got started clinically and why it's used for diagnosis. Not good if you want heavy genetics and bioinformatics and the like.
A decent listen, good for anyone interested in how exome sequencing really got started clinically and why it's used for diagnosis. Not good if you want heavy genetics and bioinformatics and the like.
August 3, 2017
Overall, and excellent and inspiring book!However, I have a few criticisms:
1) Not a SINGLE mention of my girl Rosalind Franklin (although James Watson is quoted as saying "In 1951, I saw that X-ray of DNA").
2) Repetitive at times, such as mentioning the four bases of DNA, but I do know that I have a stronger science background than this book's intended audience
1) Not a SINGLE mention of my girl Rosalind Franklin (although James Watson is quoted as saying "In 1951, I saw that X-ray of DNA").
2) Repetitive at times, such as mentioning the four bases of DNA, but I do know that I have a stronger science background than this book's intended audience
February 2, 2020
Thank you to the Volker family for sharing their experiences. Many times the book was difficult to read when it was describing how Nic was suffering. I hope he's doing well now. I see the Volkers have established a foundation to support and raise money for gene sequencing to help other families. This book has motivated me to read other true medical mystery books.
August 9, 2017
Excellent book! Even though it's a "medical" story, it reads along the same lines as "The Immortal Life of Henrietta Lacks". An amazing story of doctors and a family that come together to cure a very sick child.
May 6, 2018
Really interesting story about a boy with a mystifying disease. How the amazing doctors at the Medical College of Wisconsin made history by being the first to sequence his genome and discover a way to save his life.
June 21, 2019
I couldn’t put it down. The descriptions of Nic’s suffering break your heart, but the strength and endurance of everyone involved is inspiring. I also learned a lot about the way research is done at the cutting edge of science and medicine.
This entire review has been hidden because of spoilers.
January 4, 2017
Fascinating introduction to what we're made of -- it has been said that genes are God's language. This book spurred me on to read/learn more.
June 22, 2017
It was a fascinating story from a science and technology standpoint, but personally, I found the focus on the mother irritating.
July 28, 2017
Disappointing. Light on science and ethics, heavy on fluff.
March 11, 2019
Read for school, very interesting, but a lot of history and science. Focused a lot of the time on describing different people that became involved in solved this medical mystery.
April 22, 2019
3.5 stars
February 19, 2021
this review is one in two hundred and thirty two
April 8, 2022
3.5 stars.
December 20, 2016
Written in the style of a newspaper article, the book would have been been as a series of pieces.
February 26, 2017
Incredible story - couldn't put this book down!
August 29, 2016
Listened to the unabridged audiobook -- a wonderfully narrated, extraordinary, wrenching story of a two-year old boy who develops a rare, critically life-threatening gastrointestinal disease that threatened to destroy not only his childhood and body but that of his family as well. From the beginning, although I had the sense that there would be a happy, positive outcome to this story, (I had not read nor heard anything about this landmark medical case) the painful episodes and close brushes with death retained their immediacy as did his parents' pain and struggle to remain fiercely optimistic. This a story which details complex scientific/ medical concepts and procedures having to do with genome sequencing that is told simply but not simplistically. Important ideas and events are repeated at crucial points otherwise I certainly could have become lost. I came away with renewed wonder and awe of the human beings who labor in the rarified atmosphere of research labs. Their brain power, dedication, imagination, diligence and commitment to helping other people that they may never meet renews my faith in humankind and kind humans! Although episode involving Mom's decision to undergo breast-reduction surgery highly-troubling.
Nevertheless, highly recommend.
Nevertheless, highly recommend.
May 19, 2016
I confess I skimmed over some of the medical details, even though this is a medical nonfiction book. I read much more carefully the parts about the terribly ill little boy and his thoroughly discombobulated family. Once I started reading, I couldn't stop. I had to know the fate of this child who was suffering so much with an unknown disease. The Pulitzer Prize-winning journalists who wrote the book have done a superb job of integrating the life of the family, the tenaciousness of certain doctors, and the consequences and promise of genomic medicine. As much as anything, this book showcases how science is done, with all its challenges, disappointments, and occasional breakthroughs.
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