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The Boy Who Wasn't Short: Human Stories from the Revolution in Genetic Medicine
A geneticist tells the stories of men, women, and children whose genes have shaped their lives in unexpected ways.
It was while listening to a colleague tell the parents of a newborn girl that their daughter was going to die that a lifelong interest in genetic medicine was sparked in Dr. Edwin Kirk. Warmth and gentleness tempered a direct, sure manner--this was the medicine he wanted to practice, where the most advanced science and the most deeply humane care meet and merge. Twenty-five years later, Kirk works both with patients and in the lab, meanwhile spearheading a campaign that will change the way we think about having babies.
Written with insight and gentle humor, The Boy Who Wasn't Short tells tales about his work, such as the moment the realization that a young boy wasn't short ended up saving the life of his mother--and how Angelina Jolie has saved the lives of many more. Sit in the room with Kirk and his patients as they navigate the world of heartbreaking uncertainties, tantalizing possibilities, and thorny questions of morality. In genetics, it is the particularities of an individual's history that matter, and here, in clear and considerate writing, those individual stories are given voice.
It was while listening to a colleague tell the parents of a newborn girl that their daughter was going to die that a lifelong interest in genetic medicine was sparked in Dr. Edwin Kirk. Warmth and gentleness tempered a direct, sure manner--this was the medicine he wanted to practice, where the most advanced science and the most deeply humane care meet and merge. Twenty-five years later, Kirk works both with patients and in the lab, meanwhile spearheading a campaign that will change the way we think about having babies.
Written with insight and gentle humor, The Boy Who Wasn't Short tells tales about his work, such as the moment the realization that a young boy wasn't short ended up saving the life of his mother--and how Angelina Jolie has saved the lives of many more. Sit in the room with Kirk and his patients as they navigate the world of heartbreaking uncertainties, tantalizing possibilities, and thorny questions of morality. In genetics, it is the particularities of an individual's history that matter, and here, in clear and considerate writing, those individual stories are given voice.
244 pages, Kindle Edition
Published May 13, 2021
5 people are currently reading
161 people want to read
About the author
Edwin Kirk
6 books3 followersDr. Edwin Kirk is both a clinical geneticist and a genetic pathologist, a rare combination. As a clinician, he sees patients at Sydney Children's Hospital, where he has worked for more than 20 years. He is also a researcher, working in the fields of cardiac genetics, metabolic diseases, and intellectual disability, studies reproductive carrier screening, and is a co-author of more than 100 publications in scientific journals.
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Displaying 1 - 4 of 4 reviews
August 8, 2021
Did you know that koalas have fingerprints indistinguishable from humans? I'm not sure how this could be a loophole for Australian criminals! I also learned that you can do your own DNA extraction at home. It's not very difficult and involves dishwashing liquid, strawberries and rubbing alcohol. It's got a lot of steps to do but you end up with strawberry DNA. This review is much more about Nazis than strawberries though.
This is a hard read, major concentration required but is very interesting as it explains all sorts of genetic syndromes nascence be it 'de nova' (just happened) or familial. I have learned a lot about genes and had a sort of schadenfreude interest in syndromes fed. Also information that I had not found anywhere else.
There is much discussion of carrier screening as genetic testing before or during pregnancy which is free to all groups of people in Israel and to the rest of the world if they know about it and can afford it (or have insurance). I understand that this would reduce a lot of the terrible syndromes that a child can be born with. In the worst case a fertilized few days old egg can be tested, or more likely through IVF several eggs, and those that don't carry the genetic mutations would be implanted, leading to a healthy baby. I wonder if this would be acceptable to those against abortions?
In the discussion about PKAN (essentially a genetic build-up of iron in the body) which used to be referred to as Hallervorden-Spatz disease but "There has been a movement to rename Hallervorden–Spatz disease to pantothenate kinase-associated neurodegeneration given Hallervorden and Spatz’s complicity in murderous Nazi programs.". Sagepub The author does not mince words when describing Hallervorden but does say that he was described by others as, "warm, friendly and an inspiring teacher', 'good-natured, personally modest and possessing a dry humour'. "During his lifetime he published 120 papers and received many honours for his contribution to medical science." I call him a monster, and his colleague, both of them the worst kind of monsters.
I looked them up online and along the way discovered the first person murdered by Hitler, a little boy.
Major Leo Alexander, a psychiatrist in the US Army, originally from Vienna, quotes Hallervorden as saying
What else is there to say? I learned a lot about genetics and disease in this book, I learned more details about the murder of at least 120,000 people who had mental or physical disorders or diseases, and about scientists who enthusiastically profited from them.
Good book, written by an author with a lovely personality and sense of humour who inserts himself in the small print wherever he feels the need to make a personal comment. Not an easy read, but an enlightening one.
This is a hard read, major concentration required but is very interesting as it explains all sorts of genetic syndromes nascence be it 'de nova' (just happened) or familial. I have learned a lot about genes and had a sort of schadenfreude interest in syndromes fed. Also information that I had not found anywhere else.
There is much discussion of carrier screening as genetic testing before or during pregnancy which is free to all groups of people in Israel and to the rest of the world if they know about it and can afford it (or have insurance). I understand that this would reduce a lot of the terrible syndromes that a child can be born with. In the worst case a fertilized few days old egg can be tested, or more likely through IVF several eggs, and those that don't carry the genetic mutations would be implanted, leading to a healthy baby. I wonder if this would be acceptable to those against abortions?
In the discussion about PKAN (essentially a genetic build-up of iron in the body) which used to be referred to as Hallervorden-Spatz disease but "There has been a movement to rename Hallervorden–Spatz disease to pantothenate kinase-associated neurodegeneration given Hallervorden and Spatz’s complicity in murderous Nazi programs.". Sagepub The author does not mince words when describing Hallervorden but does say that he was described by others as, "warm, friendly and an inspiring teacher', 'good-natured, personally modest and possessing a dry humour'. "During his lifetime he published 120 papers and received many honours for his contribution to medical science." I call him a monster, and his colleague, both of them the worst kind of monsters.
I looked them up online and along the way discovered the first person murdered by Hitler, a little boy.
In 1935, Hitler announced that in the event of war the “destruction of life unworthy of life” would immediately follow. It was not until the summer of 1939 that the Nazi party took the opportunity to put this claim into effect. In mid-July 1939 a child named Gerhard Kretschmar was born severely disabled, apparently leading the father to beg the head physician to put the baby to death. However, under German law both murder and assisted suicide were crimes punishable by a court of law. To go around this law, Dr. Karl Brandt, an attending physician of Hitler, petitioned the Fuhrer to permit the “mercy killing” of this child. Hitler granted permission, thereby initiating one of the Nazi party’s most horrendous programs.(People 'not worthy of life' were mental and physically defective people, Jews, Gypsies, Afro-Germans, anyone opposing the Nazi regime).
Hitler officially signed a decree in October 1939, which was backdated to September, legalizing “mercy deaths” for patients with “incurable illnesses.” Under the code name Aktion T4- Operation T4, medical professionals began to urge parents with disabled children to admit their children to “specially designed” pediatric wards.23 Built to deceive, these were not specially designed wards for children with disabilities, but instead child killing wards. Here, physicians and other medical staff routinely murdered infants and toddlers by means of lethal overdoses or starvation. Dr. Julius Haller . Julius Hallervorden’s Role in Nazi “Euthanasia”"So to get Hallervorden, 'Until his death in 1965, he systematically opposed the dissemination of any information about his past. He was supported in this by all his German colleagues.'
Major Leo Alexander, a psychiatrist in the US Army, originally from Vienna, quotes Hallervorden as saying
I heard that they were going to do that, [kill the mental defectives] and so I went up to them and told them 'Look here now, boys, if you are going to kill all these people, at least take the brains out so that the material could be utilised’. They asked me: ‘How many can you examine?’ and so I told them: ‘an unlimited number – the more the better’. I gave them fixatives, jars and boxes, and instructions for removing and fixing the brains, and then they came bringing them in like a delivery van. There was wonderful material among those brains, beautiful mental-defectives, mal-formations and early infantile diseases. I accepted these brains of course. Where they came from and how they came to me was really none of my business.Spatz, Hallevordan's superior, (in Alexander’s words)
Denied that he or any other member of his Institute (which would include Hallervorden) ever had received any. He added that the killing of the insane was done in deep secret, that nobody was supposed to know about it except SS personnel that consequently no scientific institutions could becontacted in order to undertake neuropathological studies, and that thus invaluable pathologic material was lost and remained unutilized.One of them was speaking the truth, or something close to it, as other researchers and authors have found that Hallervorden was actually complicit in organising the murders of the mentally ill as much as profiting from their corpses. I chose these quotes because the author, J.T. Hughes, was personally acquainted with both Hallervorden and Spatz. Neuropathology in Germany during World War II: Julius Hallervorden and the Nazi programme of ‘euthanasia’
What else is there to say? I learned a lot about genetics and disease in this book, I learned more details about the murder of at least 120,000 people who had mental or physical disorders or diseases, and about scientists who enthusiastically profited from them.
Good book, written by an author with a lovely personality and sense of humour who inserts himself in the small print wherever he feels the need to make a personal comment. Not an easy read, but an enlightening one.
August 5, 2023
There is an occasional tidbit of information that blows you away. But more often than not, there's a not so fine balance between recounting cases and chit-chat between the author and we the reader, flitting from one to another in a manner that not only breaks the link but also frustrates you. A better editor would've worked wonders for this book
September 6, 2022
my favourite popular science book thus far! so many stories, so much information and plenty of humorous writing. really easy to read and super interesting.
September 26, 2025
The concept of this book is excellent and the title captivating. However, unless you are interested in the technical /scientific part of genetics this isn't the book for you .
The human stories make up a very small part of the chapters and I therefore found the book heavy going .
Not any easy read, but no doubt well explained.
The human stories make up a very small part of the chapters and I therefore found the book heavy going .
Not any easy read, but no doubt well explained.
Displaying 1 - 4 of 4 reviews