Saving Henry: A Mother's Journey [Hardcover]

Laurie Strongin (Author)

Book Description

Age Level: 18 and up

"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 illness: 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 it: "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 truth: 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

Editorial Reviews

From Booklist

The subtitle shorthands Strongin’s ongoing battle with her baby Henry’s rare and fatal disease, Fanconi anemia. In 1996, when Henry was six months old, she learned she was pregnant and also her preimplantation genetic diagnosis (PGD), the result of a procedure “combining in vitro fertilization with genetic testing conducted prior to embryo transfer.” PGD could identify and implant an artificially conceived embryo whose umbilical cord blood, collected at birth, and stem cells, transplanted to Henry, could cure Henry’s disease. Laurie and husband Allen were the pioneer PGD couple, unsupported by precedents, support groups, ethical guidelines, or regulations of any sort. Shortly after Jack was born healthy, Mark Hughes, an essential medical-team member, was charged with violating the newly established federal ban on stem cell research, and his previous work was lost. Months passed. Henry’s blood counts fell. Finally, Hughes found work “absent the government’s stranglehold.” Strongin smoothly integrates medical information into this compelling tale of fear, helplessness, frustration, and unflagging love for a beautiful child’s spirit. Sure to inspire many readers. --Whitney Scott

About the Author

Laurie Strongin is the founder and executive director of the Hope for Henry Foundation, which brings entertainment, laughter, and smiles to seriously ill children. She also acts as a family advocate in the national discussion of ethics and genetics. She has participated as a panelist and guest lecturer in forums hosted by the Johns Hopkins Genetics and Public Policy Center. In 2006, Laurie joined Congresswoman Nancy Pelosi to urge Congress to pass the Stem Cell Research Enhancement Act. She is a regular panelist on Clear Channel's Sunday radio program Women Talk and lives with her family in Washington, D.C.

Product Details

• Reading level: Ages 18 and up
  
• Hardcover: 288 pages
• Publisher: Hyperion; 1 edition (March 2, 2010)
• Language: English
• ISBN-10: 1401323561
• ISBN-13: 978-1401323561
• Product Dimensions: 8.5 x 6 x 0.9 inches
• Shipping Weight: 14.4 ounces (View shipping rates and policies)
• Average Customer Review: 4.9 out of 5 stars  See all reviews (17 customer reviews)
• Amazon Best Sellers Rank: #978,605 in Books (See Top 100 in Books)

More About the Author

Laurie Strongin, Henry Strongin Goldberg's mom and author of Saving Henry, is the Founder and Executive Director of Hope for Henry Foundation.

Prior to joining Hope for Henry, Laurie was Senior Director of Wealth Creation at the Fannie Mae Foundation, the largest foundation in the country devoted to affordable housing and the revitalization of communities. Her career in housing began when she served as Deputy National Coordinator for Neighborhood Reinvestment's NeighborWorks Campaign for Home Ownership and as head of marketing for the Neighborhood Reinvestment Training Institute.

In addition to her work in the affordable housing field and as Executive Director of Hope for Henry Foundation, Laurie acts as a family advocate in the ongoing national discussion about ethics and genetics. She has participated as a panelist and guest lecturer in a range of forums from the Johns Hopkins Genetics and Public Policy Center to Georgetown University's Kennedy School of Ethics on the science of pre-implantation genetic diagnosis and its use to preserve families. She has also served as family representative to the University of Minnesota Interdisciplinary Working Group on Ethics and Preimplantation Genetic Diagnosis. She published an op-ed in the Washington Post in the summer of 2006, on stem cell research titled "Vetoing Henry."

Laurie appears on a weekly radio show "Women Talk" broadcast on Clear Channel stations throughout the Washington metropolitan area.

Laurie's work with Hope for Henry Foundation has been recognized by the local Washington, DC ABC television affiliate. She received a 2005 WJLA-TV Toyota Tribute to Working Women Award "honoring outstanding individuals who make our community a better place in which to live."

Laurie lives with her husband Allen Goldberg and sons Jack and Joe in Washington, DC.

Customer Reviews

Most Helpful Customer Reviews

10 of 11 people found the following review helpful:

5.0 out of 5 stars This book is a must-read!!, March 2, 2010

By 

Julie Bender (Brookeville, MD) - See all my reviews
(REAL NAME)   

This review is from: Saving Henry: A Mother's Journey (Hardcover)

Saving Henry is a beautifully written, heartfelt tribute to an amazing child and his equally inspiring mother. The love that Laurie and Allen have for Henry is apparent from the moment he is born and even though they face numerous challenges, we never lose sight of the incredible bond between these loving parents and the child they so desperately want to save. Intermingled with inspiring stories about Henry's life and how well he lived, are the heart breaking medical failures that eventually lead to his untimely death. Even though he faces a painful terminal illness, Henry's life is filled with joy and love and happiness. Reading this book, although sad and painful at times, makes us appreciate the little things in life we so often take for granted. It shows us that a mother's love has no limits, even when our bodies do. We learn that superheroes come in all shapes and sizes, even brave little boys. And most importantly, it teaches us to value every day we have with the people we love and inspires us to truly "live well and laugh hard."

7 of 8 people found the following review helpful:

5.0 out of 5 stars Not a weepy; a great and uplifting, informative read, March 26, 2010

By 

Sharon DeLevie (Hastings-On-Hudson, NY USA) - See all my reviews
(REAL NAME)   

This review is from: Saving Henry: A Mother's Journey (Hardcover)

Boy, was I not going to read this book. Who wants additional pain; there's enough sadness? But I heard the author, Laurie Strongin, do a presentation and she was just so positive and appealing and smart that I really enjoyed her, even with a tear or two rolling down my cheek. I bought the book but still thought I wouldn't read it. But then I did, and I am so glad I did.

It reads like a mystery that you know the end of, but still need to find out how to get there.
It reads like an incredible love story that, again, you know has a sad ending, but was so worth it all the way.
It reads like a family chronicle of strength and support in a very Jewish way, for me.
It reads like an adventure story filled with Funland, Disney, Pringles, M&M's, and lots of ice cream.
It completely reads like a true hero story, and while I know it's Henry, it is so so Laurie. She keeps marveling at his courage, his attitude, his positivity, and while I know kids come with their own little packaged personalities, there is nurture involved, and he gets so much of his approach to life from her. That is clear as day.

I also learned a ton in a short time about how politics (not the boring kind) affects our very lives, and I mean that as our ability to actually stay alive. You can't read this without shaking your fist at the misconceptions that exist about stem cells and their origin.

It's not maudlin. I did not cry reading it. I was too interested. Strongin doesn't try to pull our heartstrings, but they are pulled nevertheless. I cried later, digesting it. For her loss, for all of our loss. For gratitude. Since my mom got sick with 4th stage lung cancer last year, we have been focusing on living each day the way Laurie talks about it. Maybe not as many Pringles, mind you, but lots of family time and dinners and laughing. Strongin's book is much less about Henry's death than his life, and in a way, all of our lives. Thanks to Henry and Laurie for making the world a better place.

6 of 7 people found the following review helpful:

5.0 out of 5 stars Great new book!, March 7, 2010

By 

Dave G - Maryland - See all my reviews

This review is from: Saving Henry: A Mother's Journey (Hardcover)

Saving Henry is a must read. It is a reminder of what is really important in life, what others deal with every day and how important it is to live every day to the fullest with our families. I appreciate Laurie (and her husband Allen) sharing so much of their lives for all of us to benefit.