Medical Ethics, Medical Research, Infant & Child Patients - Biography, Biotechnology & Bioengineering, Hematology, Cytology - Stem Cells

Saving Henry: A Mother's Journey

Name: Saving Henry: A Mother's Journey
Author: Laurie Strongin
ISBN: 9781401395070

by Laurie Strongin

Available on Bookshop Write a review

Books.org participates in affiliate programs including Bookshop.org and the Amazon Services LLC Associates Program. We may earn a commission from qualifying purchases made through links on this page, at no additional cost to you.

Overview

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.

Synopsis

"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.

About the Author, Laurie Strongin

Laurie Strongin is the Founder and Executive Director of Hope for Henry Foundation, which brings smiles and laughter to seriously ill children. Prior to that, Laurie was Senior Director of Wealth Creation at the Fannie Mae Foundation. Laurie also 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 hosted by the Johns Hopkins Genetics and Public Policy Center on preimplantation genetic diagnosis. In 2006, Laurie joined Nancy Pelosi to urge the Senate to pass the Stem Cell Research Enhancement Act. That summer, Laurie published an Op-Ed in the Washington Post. She and her family were featured on Nightline, and in a New York Times piece, as well.

Laurie is a regular panelist on Clear Channel's Sunday radio program, "Women Talk," broadcast in the Washington, D.C. area on WMZQ, WASH-FM, WBIG and DC101. She lives in Washington, D.C.

Reviews

There are no reviews yet. Log in to write one.

Editorials

Publishers Weekly

Within a month of his 1995 birth, Henry Strongin Goldberg was diagnosed with Fanconi anemia, a rare, frequently fatal genetic disease that disproportionally strikes Ashkenazi Jews. It frequently leads to aplastic anemia, a fatal disorder compromising the body's ability to fight infection unless cured by a successful stem-cell transplant from the umbilical-cord blood of a perfectly matched sibling donor. As previously chronicled by a New York Times Magazine writer and on ABC TV's Nightline, the author and her husband became the first FA carriers to use a controversial procedure to identify and implant an artificially conceived embryo that was a healthy genetic match for Henry. But after nine failed attempts at conceiving in four years and government interference, they ran out of time and had to resort to a mismatched, unrelated donor. Two years and numerous complications later, seven-year-old Henry—intelligent, charming, and supremely brave—died. Strongin's frank description of her experience as the mother of a dying child and her lucid explanations of medical jargon will be helpful and inspiring to parents in similar straits and a boon to those whose children suffer from Fanconi anemia. (Mar.)

Kirkus Reviews

Personal recollections of the mother of a child with a deadly disease, revealing the high and lows of his short life and advocating support for embryonic stem-cell research. Strongin, founder of a foundation that provides programs for children with life-threatening illnesses, gave birth in 1995 to Henry, who had Falconi anemia, a rare genetic disorder. Stem cells from the umbilical-cord blood of a perfectly matched sibling-a healthy brother or sister whose human leukocyte antigen was the same as Henry's-offered the best chance for Henry's survival. When Strongin and her husband learned that a new process called preimplantation genetic diagnosis (PGD) could select a matching embryo by extracting and examining its DNA, they opted to use the available science to try to produce a life-saving sibling for Henry. However, after Congress passed the Dickey Amendment in 1995, embryonic stem-cell research was greatly hampered and their doctor, a leading PGD researcher, lost his job, costing them precious time. Henry was two years old before the process could restart. Strongin kept a journal, recording her hopes and disappointments during her experiences with the PGD process, which involved repeated injection of fertility drugs, in-vitro fertilization and implantation. After four years, nine attempts and thousands of dollars, time ran out, and doctors gave Henry a stem-cell transplant from the bone marrow of an unrelated donor. The author relates not just the medical and emotional ups and downs, but the family's successful efforts to give Henry, an outgoing boy with a winning personality, a happy childhood. Additional glimpses of Henry appear in lists of his favorite things-collecting marbles,sleeping in tents, root-beer-flavored anesthesia, reading by headlamp-that precede each chapter, and excerpts from postings on her husband's blog about Henry round out the portrait. A heartrending story that sends a clear message about the life-saving potential of stem-cell research. Select events in Washington, D.C.