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Saving Henry: A Mother's Journey
"A heartbreaking story, exquisitely told . . . Laurie Strongin's integrity, humanity, and wisdom are an inspiration to the rest of us."
--David Shenk, author of The Forgetting Saving Henry is the eye-opening and inspiring story of how far a family will go to save the life of their child. Laurie Strongin's son Henry was born with a heart condition that was operable, but which proved to be a precursor for a rare, almost-always fatal Fanconi anemia. Deciding to pursue every avenue that might provide a cure, Laurie and her husband signed on for a brand new procedure that combined in vitro fertilization with genetic testing to produce a baby without the disease, who could be a stem cell donor for Henry. As Laurie puts "I believe in love and science, nothing more and nothing less." Laurie and her husband endured nine failed courses of the procedure before giving up. But Saving Henry is also about hope. It is the story of Henry, the feisty little boy who loved Batman, Cal Ripken Jr., and root beer-flavored anesthesia, and who captivated everyone with his spunk and positive attitude. When the nurses came to take blood samples, Henry brandished his toy sword and said, "Bring it on!" When he lost his hair after a chemo treatment, he declared, "Hey, I look like Michael Jordan!" Laurie became a fervent advocate for stem cell research, working with policymakers and the scientific community to bring attention to Henry's case and to the groundbreaking research that could save many lives. Henry's courage and bravery inspired nurses, doctors, friends, and family. Saving Henry is the story of one family's search for a cure, and the long-lasting scientific impact their amazing little boy has had. Praise for Saving Henry "How do you make beauty and meaning out of unimaginable sorrow? Saving Henry is a stirring account of struggle, love, and loss that manages to be both honest and inspiring."
--Rabbi David Wolpe, author of Making Loss Matter and Why Faith Matters "Henry's story is important and newsworthy; a testament to how the debate over medical technology and stem cell research is not just an academic argument, but also a searingly personal one. Mostly, though, it's an intimate love story. We should all learn from Henry what his family has learned--to live well and laugh hard."
--Lisa Belkin, journalist, The New York Times " Saving Henry is a marvelously told tale of love triumphant. Parents often say they would do anything for their children. This is the story of a couple that actually did."
--Jeffrey Goldberg, national correspondent, The Atlantic "There's a reason Saving Henry rings with so much the author lived every word of it. It's a vivid, beautifully rendered, and almost painfully honest account of a journey none of them wanted to take, but could not avoid, thanks to a bad throw of the genetic dice. Laurie, her husband Allen, and especially little Henry, become pioneers in a landscape of complex technological procedures that offer hope but also bring pain . . . and yet they keep trying. This is a tale of a family that will not quit."
--John Donvan, correspondent, ABC News "Strongin has a gift for telling a complex medical story as an unfolding family narrative--a family that in so many ways is my family, your family, anybody's family. Any of us in today's world could find ourselves facing the difficult and challenging set of decisions this family had to make. Strongin's story is a truthful and honest road map we may want to follow."
--Dr. Ranit Mishori, contributing health editor, Parade Magazine ; professor, Georgetown University School of Medicine
--David Shenk, author of The Forgetting Saving Henry is the eye-opening and inspiring story of how far a family will go to save the life of their child. Laurie Strongin's son Henry was born with a heart condition that was operable, but which proved to be a precursor for a rare, almost-always fatal Fanconi anemia. Deciding to pursue every avenue that might provide a cure, Laurie and her husband signed on for a brand new procedure that combined in vitro fertilization with genetic testing to produce a baby without the disease, who could be a stem cell donor for Henry. As Laurie puts "I believe in love and science, nothing more and nothing less." Laurie and her husband endured nine failed courses of the procedure before giving up. But Saving Henry is also about hope. It is the story of Henry, the feisty little boy who loved Batman, Cal Ripken Jr., and root beer-flavored anesthesia, and who captivated everyone with his spunk and positive attitude. When the nurses came to take blood samples, Henry brandished his toy sword and said, "Bring it on!" When he lost his hair after a chemo treatment, he declared, "Hey, I look like Michael Jordan!" Laurie became a fervent advocate for stem cell research, working with policymakers and the scientific community to bring attention to Henry's case and to the groundbreaking research that could save many lives. Henry's courage and bravery inspired nurses, doctors, friends, and family. Saving Henry is the story of one family's search for a cure, and the long-lasting scientific impact their amazing little boy has had. Praise for Saving Henry "How do you make beauty and meaning out of unimaginable sorrow? Saving Henry is a stirring account of struggle, love, and loss that manages to be both honest and inspiring."
--Rabbi David Wolpe, author of Making Loss Matter and Why Faith Matters "Henry's story is important and newsworthy; a testament to how the debate over medical technology and stem cell research is not just an academic argument, but also a searingly personal one. Mostly, though, it's an intimate love story. We should all learn from Henry what his family has learned--to live well and laugh hard."
--Lisa Belkin, journalist, The New York Times " Saving Henry is a marvelously told tale of love triumphant. Parents often say they would do anything for their children. This is the story of a couple that actually did."
--Jeffrey Goldberg, national correspondent, The Atlantic "There's a reason Saving Henry rings with so much the author lived every word of it. It's a vivid, beautifully rendered, and almost painfully honest account of a journey none of them wanted to take, but could not avoid, thanks to a bad throw of the genetic dice. Laurie, her husband Allen, and especially little Henry, become pioneers in a landscape of complex technological procedures that offer hope but also bring pain . . . and yet they keep trying. This is a tale of a family that will not quit."
--John Donvan, correspondent, ABC News "Strongin has a gift for telling a complex medical story as an unfolding family narrative--a family that in so many ways is my family, your family, anybody's family. Any of us in today's world could find ourselves facing the difficult and challenging set of decisions this family had to make. Strongin's story is a truthful and honest road map we may want to follow."
--Dr. Ranit Mishori, contributing health editor, Parade Magazine ; professor, Georgetown University School of Medicine
- GenresNonfictionMemoirMedicine
288 pages, Hardcover
First published January 1, 2010
4 people are currently reading
137 people want to read
About the author
Laurie Strongin
3 books6 followersLaurie Strongin is the author of Saving Henry, a memoir of her life with her son Henry, who was born with an extremely rare genetic disease, Fanconi anemia. The book chronicles her pioneering use of cutting edge science to have another child who would be born healthy and provide the cord blood needed to save Henrys life. Following Henrys death in 2002, Laurie founded the Hope for Henry Foundation, which brings smiles and laughter to seriously ill children. Laurie also is a family advocate in the ongoing national discussion about ethics and genetics.
Laurie and her family live in Washington, DC.
"
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Displaying 1 - 30 of 32 reviews
July 6, 2010
"Seven years, one month, two weeks, and two days after he was born, Fanconi anemia took my son away."
Is there any way to read those words without choking up? Without *somewhat* imagining if it happened to you. I say 'somewhat' because I tried. I couldn't. People use the expression "I couldn't even imagine it" so often. Because of the types of books I read you could randomly pick out any ten reviews of adult books I've read and probably find some version of that statement. And I meant it or I wouldn't have typed it. Somehow it hits harder in a book like this though.
As with Alex: The Life of a Child, this book is hard to read. For more reasons than the death of a child although that, of course, is the worst. I can't count how many times I cried. I was reading at a steady rate until this morning when I found I could barely put the book down.
There is so much more included here than Henry dying. Besides the family in the book I mentioned above I don't know I've ever heard of stronger people than this family. What this little boy, and his family, went through, through no fault of their own, is astounding. No Mother should have to face that and no child should have to deal with it.
I felt sucj overwhelming feelings of anger while I read this. Anger? What's up with that right? Why do we have huge million dollar venues to play games yet no money to research life saving drugs, techniques and machines? Why do we may Britney Spears, Jay-Z, and Madonna millions upon millions each year and forget about everything important? Why do the atheletes and people in politics make more than they could ever spend? Why are they picking out a certain type of counter top being imported from some barely heard of place when a little girl or boy is dying?
I am in absolutely no way an advocate for "spare parts". I'm against abortion so I could never, ever be for something so disgusting. But I am for a family having a baby that is wanted to save another childs life. That is just not "spare parts". Yes, this is something that could lead to "designer babies". So DON'T let that happen. Allow the good to happen and keep the bad out. Not always possible right? It is here. With the idiotic laws in place in this country (which is becoming more ugly by the day to me) we could have laws in place to prevent having a certain sex baby or a baby with a certain eye color.
I had a lot more to say but I'm so disgusted that I need to move on to something else. Read the book and decide for yourself. But think about it first. Even if it's impossible for you, try to imagine if it was YOU and YOUR BABY....
Is there any way to read those words without choking up? Without *somewhat* imagining if it happened to you. I say 'somewhat' because I tried. I couldn't. People use the expression "I couldn't even imagine it" so often. Because of the types of books I read you could randomly pick out any ten reviews of adult books I've read and probably find some version of that statement. And I meant it or I wouldn't have typed it. Somehow it hits harder in a book like this though.
As with Alex: The Life of a Child, this book is hard to read. For more reasons than the death of a child although that, of course, is the worst. I can't count how many times I cried. I was reading at a steady rate until this morning when I found I could barely put the book down.
There is so much more included here than Henry dying. Besides the family in the book I mentioned above I don't know I've ever heard of stronger people than this family. What this little boy, and his family, went through, through no fault of their own, is astounding. No Mother should have to face that and no child should have to deal with it.
I felt sucj overwhelming feelings of anger while I read this. Anger? What's up with that right? Why do we have huge million dollar venues to play games yet no money to research life saving drugs, techniques and machines? Why do we may Britney Spears, Jay-Z, and Madonna millions upon millions each year and forget about everything important? Why do the atheletes and people in politics make more than they could ever spend? Why are they picking out a certain type of counter top being imported from some barely heard of place when a little girl or boy is dying?
I am in absolutely no way an advocate for "spare parts". I'm against abortion so I could never, ever be for something so disgusting. But I am for a family having a baby that is wanted to save another childs life. That is just not "spare parts". Yes, this is something that could lead to "designer babies". So DON'T let that happen. Allow the good to happen and keep the bad out. Not always possible right? It is here. With the idiotic laws in place in this country (which is becoming more ugly by the day to me) we could have laws in place to prevent having a certain sex baby or a baby with a certain eye color.
I had a lot more to say but I'm so disgusted that I need to move on to something else. Read the book and decide for yourself. But think about it first. Even if it's impossible for you, try to imagine if it was YOU and YOUR BABY....
July 19, 2012
Laurie tells her son's and family's story of their journey with Fanconi anemia with strength and lovely prose. The author is a friend of my friend Nikki, who lost her daughter, Samantha, to Fanconi anemia. Nikki gave me the book to read when I asked about an FA fundraiser she was attending for the Hope for Henry Foundation. Laurie opened up my understanding of this devastating disease and shared Henry, with all his valuable daily living lessons he unknowingly gave the world. Beautiful and sad, but I'm glad I read it.
August 29, 2018
A heartbreaking story of a mother's desperate attempts to save her son, Henry, who was born with Fanconi's Anemia and all the serious complications that come with the diagnosis. Prior to reading 'Saving Henry', I'd heard of FA in passing, but never truly learned what it meant for those afflicted with it. Henry had heart problems and an an extra thumb at birth, both correctable but hallmarks of the disease. It was the certainty of his bone marrow eventually failing that makes living with FA a game of chance, never knowing when the day would come where that threshold would be passed. A bone marrow transplant could save him, but Henry was unlucky enough to be born in the dawn of the stem cell research era and subsequent controversy over stem cell therapies, such that when his family needed it most, the research came to a grinding halt.
It was this discussion regarding Henry's need for a stem cell transplant that piqued my interest most, because his mother, Laurie, talks about needing an HLA-matched donor, ideally a sibling, but at minimum a stranger who matched at 5 out of 6 antigens they tested for at the time. Most books that talk about tissue typing and matching gloss over HLA, give it a sentence or two, and move on. So to read multiple passages that discuss the science that has been my career for the last 11+ years makes me feel that at least one non-science person out there has taken the time to understand what we do and its importance.
The Strongins were to be the first family to use PGD (pre-implantation genetic diagnosis) to screen potential embryos for the genetic markers for Fanconi Anemia, then among the non-affected embryos, find one that is HLA-identical to Henry. The criteria were strict in choosing them as a family who qualified, as they had to genuinely want another child (as opposed to having a baby for the sole purpose of that child being a lifesaving cell donor for the ill child), and the screening be medically necessary to exclude a fatal disease or birth defect. When the scientist who developed PGD had his lab shut down by the government due to concerns over 'playing God', he was forced to start anew in his private lab, losing a year of research and all of the Strongins' embryos and test results. Combined with multiple rounds of IVF where either there were no Fanconi-free embryos who were an HLA match for Henry or the implanted embryos failed to 'take', and Laurie never ended up carrying the sibling whose cord blood could potentially save him. In fact, both of Henry's little brothers, who were Fanconi-free but not HLA-matched, came about the old-fashioned way of getting pregnant.
It was not an all-together sad book though, as the Strongins made the most of the 7 years they had with Henry, squeezing in fun whenever possible between Henry's hospitalizations. Sometimes it took creativity, like going to their favorite amusement park first thing in the morning before other kids could get their germy hands all over the rides, or sending Dad and little brother, Jack, into Toys 'R Us with a walkie-talkie so Jack could describe to Henry, who waited in the car with Mom, every Batman or Pokemon figure on the shelf. Plus, Henry was able to fall in love with a little girl at his preschool, and the feeling was mutual, such that following his funeral, she wrote in her diary that none of the boys at school could have her heart, as it would always belong to Henry.
Overall, an enlightening tale about the strength of a family when confronted with insurmountable odds and how they lived each day like it was the last with their little boy.
It was this discussion regarding Henry's need for a stem cell transplant that piqued my interest most, because his mother, Laurie, talks about needing an HLA-matched donor, ideally a sibling, but at minimum a stranger who matched at 5 out of 6 antigens they tested for at the time. Most books that talk about tissue typing and matching gloss over HLA, give it a sentence or two, and move on. So to read multiple passages that discuss the science that has been my career for the last 11+ years makes me feel that at least one non-science person out there has taken the time to understand what we do and its importance.
The Strongins were to be the first family to use PGD (pre-implantation genetic diagnosis) to screen potential embryos for the genetic markers for Fanconi Anemia, then among the non-affected embryos, find one that is HLA-identical to Henry. The criteria were strict in choosing them as a family who qualified, as they had to genuinely want another child (as opposed to having a baby for the sole purpose of that child being a lifesaving cell donor for the ill child), and the screening be medically necessary to exclude a fatal disease or birth defect. When the scientist who developed PGD had his lab shut down by the government due to concerns over 'playing God', he was forced to start anew in his private lab, losing a year of research and all of the Strongins' embryos and test results. Combined with multiple rounds of IVF where either there were no Fanconi-free embryos who were an HLA match for Henry or the implanted embryos failed to 'take', and Laurie never ended up carrying the sibling whose cord blood could potentially save him. In fact, both of Henry's little brothers, who were Fanconi-free but not HLA-matched, came about the old-fashioned way of getting pregnant.
It was not an all-together sad book though, as the Strongins made the most of the 7 years they had with Henry, squeezing in fun whenever possible between Henry's hospitalizations. Sometimes it took creativity, like going to their favorite amusement park first thing in the morning before other kids could get their germy hands all over the rides, or sending Dad and little brother, Jack, into Toys 'R Us with a walkie-talkie so Jack could describe to Henry, who waited in the car with Mom, every Batman or Pokemon figure on the shelf. Plus, Henry was able to fall in love with a little girl at his preschool, and the feeling was mutual, such that following his funeral, she wrote in her diary that none of the boys at school could have her heart, as it would always belong to Henry.
Overall, an enlightening tale about the strength of a family when confronted with insurmountable odds and how they lived each day like it was the last with their little boy.
January 17, 2022
This has always been a favorite of mine, and is one of the few books that I have willingly read multiple times. This is a memoir of a mother’s journey battling her son’s terminal illness. It is a poignant read and very eye opening in terms of what individuals who do fertility treatments go through. This is a thoughtfully written and impactful book that I would recommend to anyone.
June 20, 2021
Devastating and gut-wrenching, but so very important for everyone who has ever voted to restrict reproductive technology and/or embryonic research or failed to vote to defend it. People have literally died as a result.
January 11, 2023
Everyone going into the medical field should read this book. Amazing.
March 1, 2025
I knew it was coming in the end but god did this story make me weep
February 25, 2017
A very well written account of a very difficult journey
April 27, 2014
An emotional story told with exquisite detail, Laurie Strongin shares her story and fight between love and science, between life and death, and between loss and hope. After multiple birth defects were spotted on first born son Henry- including an extra thumb and heart defect- the diagnosis came crashing down on their honey moon phase of parenthood: Fanconi Anemia. Rare and then labeled fatal blood condition in which one's bone marrow neglects to produce all three typed of blood cells, Fanconi Anemia is more than a failure to produce blood cells; for Strongin and her family, is was a failure to give her child his eighth birthday. As one who knew the story before picking up the book, and one whose mom is mentioned once or twice throughout the memoir, I found myself tearing up each time I picked up the novel; not always because I was saddened by the painful experiences Laurie, her husband Allen, and son Henry had to endure, but because of the beautiful, fulfilling, and 'live every day to the fullest' type of life they were able to provide for their son even in the midst of impossible to fathom hardships. Each triumph was celebrated without looking back, and each obstacle was tackled without hesitation. Laurie and her family went through something no one should ever have to, and their work with PGD may be the the reason no one ever does. Willing to test the waters with groundbreaking, and often controversial, new technologies, Laurie and Allen attempted to have a third child, whom would be born Fanconi free and be a perfect bone marrow match for Henry, when the inevitable time came that he needed a bone marrow transplant. Documented to the extent to which every reader understood what was going on to the fullest without having been there, Strongin allows for readers to understand why she made the decisions she did, and why technologies such as PGD are not just used for "designer babies", but used to save lives. Readers are able to witness what the family went through: good and bad, and to experience the light that Henry Strongin Goldberg brought to everyone he ever encountered. Able to bring out the super hero within us all, Laurie and Allen are an inspiration, and Saving Henry: A Mother's Journey allows readers to see why.
February 17, 2013
This is a very well-written and moving memoir by the mother of a child born with an inherited disease, Fanconi anemia. The best and maybe only cure for Fanconi anemia is a transplant from a sibling who is a perfect tissue match, to serve as a stem-cell donor. At least, at the time the book was written, that was the best shot at saving the child. The author sets out to create such a sibling with the help of in-vitro fertilization, and pre-implant testing of the embryos for a match. It's a fascinating story about the lengths that parents will go to to protect a child, a story most parents can relate to. It made me think of Immortal Bird, also a parent's memoir about trying to save a child with a life-threatening illness. Also an excellent book.
January 30, 2011
I can't say I enjoyed this book but I didn't not like it either. For 95% of the book, Laurie said this happened, then this happened, and then this happened. She never talked about how she was feeling or how her kids were feeling or really any type of feeling. At the end of the book, there was a excerpt from Allen's blog and in that, he described his feelings.
Having a brother with a disability, I know what it's like to be the sibling of someone in the hospital all the time. What I don't know is how Laurie interacted with Jack to explain what was going on. That, I would have liked to know.
Having a brother with a disability, I know what it's like to be the sibling of someone in the hospital all the time. What I don't know is how Laurie interacted with Jack to explain what was going on. That, I would have liked to know.
January 4, 2011
I had to work up courage to read this as I knew it would be difficult. It was but so glad I did read it. If felt like I knew Henry and I kind of do but in another wonderful boy who is my neighbor. My neighbor friend with FA is my hero as Henry was to those he met. I hope he continues to raise his sword to fight for many years to come and keep putting smiles on all the pretty girls he flirts with. I will do my part to help. Thank you Laurie for writing so honestly ... you are amazing and your family is equally amazing.
March 17, 2010
Have your tissues ready! A truly inspirational book about a DC family's struggles with their son's genetic illness. You will be counting your own blessings as soon as you begin reading. My sister knows the author personally, which made it seem a little closer to home while reading it. It doesn't seem right to say I enjoyed reading such a tragic story, but I couldn't put it down and highly recommend it. Especially if you need a good cry.
February 28, 2012
Even though you know before you read the book that it doesn't have a happy ending, you still feel the hope and love of this family throughout this book. What Henry's parents went through to save him was nothing short of heroic.
Without sounding political at all, Ms. Strongin also shows us the human side behind the politics of stem cell research.
You will laugh, cry and cheer on this family as they try their best to Save Henry.
July 21, 2010
Story about a family with a child with Fanconi Anemia. We also have a child with Fanconi Anemia. Was difficult to read because of the similarities to our life but was such a touching story with a very good outlook on trajedy.
This entire review has been hidden because of spoilers.
February 16, 2011
a true story, my friend actually knows the author, and though it is an easy read, the content is not as easy to digest.
a brief summary of the book is that it is a mother's story about her son henry who was diagnosed with fanconi anemia.
a brief summary of the book is that it is a mother's story about her son henry who was diagnosed with fanconi anemia.
July 15, 2012
Heart rendering. I have lived this journey. It wasn't any easier to read than it was to live it. This story needs to be told. It's about Hope and possibility. To save a life and to have a Healthy child to love...what a blessing to behold.
March 27, 2010
positive and enlightening but depressing book about Fanconi anemia and creating a baby to save another dying child
April 26, 2010
I knew how it ended and I still cried. So many issues in this book. Not sure where I stand on many of them. How quickly science changes.
December 1, 2010
Very touching at the end. The first half was a little slow, but it did pick-up when they fouced more on Henry's condition/journey instead of the mom trying to get preg.
June 20, 2010
great book, very inspiring.
Read
November 6, 2010I loved this story. Strongin is a great writer and sucked me right in to this sad story.
August 28, 2013
Sad account of a mother's journey to save her young son from a rare and fatal disease.
March 5, 2011
fantastic book. only complaint was that she gave away the ending in the first few pages. would rec.
September 25, 2012
This is hard to read (emotionally, not technically), but is very inspiring
Read
March 18, 2013Beautiful
May 16, 2013
Amazing.
January 23, 2016
Courage an unwavering longing to save their son drives a couple's liives for almost a decade.
March 27, 2010
One of the simultaneously most heartbreaking and inspiring books I've ever read.
April 24, 2010
Such a sad, beautiful book.
Displaying 1 - 30 of 32 reviews