Saving Henry: A Mother's Journey

by Laurie Strongin

"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 ForgettingSaving 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.

288 pages, Kindle Edition

First published March 2, 2010

About the author

Laurie 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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Reviews

[Mandy · Rating 4 out of 5]

Laurie Strongin's first son Henry was born with a genetic disorder called Fanconi's Anemia. Immediately, her dreams of a healthy and "normal" childhood for her son were dashed, as she was told details of this disease, and how her son would need open heart surgery by the time he was 6 months old. Chronicling each step of the fight against this disease, Laurie and her family fought Henry's Fanconi Anemia with rounds of PGD (Preimplantation Genetic Diagnosis). PGD was then (late 90's early 2000s) being described in the media for being on the brink of creating "Designer embryos/babies". The Strongin's fight to save Henry was a long and tough one, and Laurie's story eloquently ties together the scientific roadblocks they enountered, and the strong bond of love between a mother and her baby. This was a great introduction to how stem cell research positively contributes to helping save the lives of babies and is a beautifully written true story.

[Olivia Chelle · Rating 5 out of 5]

I read this book while working in pediatric oncology/hematology and growing close to families like that of Henry. Loving parents and siblings who were struggling with the diagnosis and treatment of their ill child. Laurie captures the heartache of illness, and she paints a phenomenal picture of an incredible boy and his fight to survive. I found this book to be inspiring, wise, honest, real, and engaging. I believe that everyone should read this book - especially those in the pediatric oncology field. It is tremendous in its authenticity and the grace with which Laurie captures such an exhausting and frustrating and painful chapter in her life. BRAVO!