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Archive for May, 2010

Monday, May 31, 2010

Curled Up With a Good Book

The review below is from “Curled Up With a Good Book.”

Losing a child is the saddest experience that any parent can imagine. To try to save a child is an immense act of faith. To live beyond such life-altering events and tell the tale for the guidance and benefit of others is a hallmark of courage. In Saving Henry, we find all these elements combined.

Laurie Strongin was a rather typical first mom when she gave birth to a son who was perilously ill, whose prognosis was grim. Little Henry was diagnosed with Fanconi anemia, a genetic disability common to Jewish Ashkenazi parents. Allen and Laurie were determined to beat the odds with Henry, odds that predicted that within the first seven years he would develop fatal bone marrow failure. The only ray of hope was that a perfect marrow donor could be found, and that description fit only one person perfectly – a sibling as yet unborn. Laurie, with her husband’s constant support, underwent a procedure called PGD (preimplantation genetic diagnosis) to try to produce a sibling who could save Henry by the donation of cord blood.

The risks were known and daunting – the new child would have to be conceived via IVF using a specially selected embryo before Henry’s crisis occurred. PGD is a controversial procedure with political as well as scientific implications, since it involves harvesting the mother’s eggs and the father’s sperm, creating embryos, then destroying the ones that will not make the perfect match needed for the purpose of saving a life. Making herself a guinea pig for this drawn-out process was physically painful for Laurie and emotionally draining for both parents. Lots of parents wait to get pregnant, but the Strongins knew they had a time limit. The new baby had to be conceived and the embryo implanted, followed by pregnancy and childbirth, all to win a race with the health crisis of their beloved firstborn.

What lifts this book out of the grief and turmoil of losing a child is the child himself, the boy everyone wanted to save. He was a dynamo of childlike energy and determination, despite the illness that constantly tracked him and brought him to low points and lower points again and again. He idolized Spiderman and his characteristic reaction to the painful medical procedures he was forced to undergo was an astonishingly brave, adult cry of “Bring it on.”

Partway through the process of trying to produce a sibling for Henry, the pioneering researcher in whom the Strongins’ hopes were vested lost his job. In the end, though the Strongins did have two more sons, the donor for Henry was an unrelated person, and Henry finally succumbed to Fanconi at the so-young age of seven.

The book is told by both parents, with Allen contributing a tough and tender portrait of Henry after his death. Laurie we hear from throughout, chronicling but not complaining about the many agonies she suffered as a woman trying desperately to get pregnant in order to save a dying son. She also keeps up with Henry’s life, loves and favorite things, conveying something of his spirit to those who will never get to meet him. She and Allen spearheaded the creation of the Hope for Henry Foundation to continue the fight for more scientific investigation of his rare disorder and push for wider acceptance for PGD, embryonic stem-cell research and related issues. Through the Foundation, Henry lives on, with gifts of his “favorite things” to ill and endangered children.

Originally published on Curled Up With A Good Book at www.curledup.com. © Barbara Bamberger Scott, 2010

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Tuesday, May 25, 2010

Putting the ‘Strong’ in Strongin

Below is a blog entry by a woman named Kimberly.

I really enjoyed reading this book. The main reason for this was due to the emotion that came through the story. I came across this book because my friend’s mother is friend’s with the author. She even helped her to write the book. I met the author as she was promoting the book and she appeared to be a very powerful woman. Soon after reading the book, I discovered just how much of a fighter she really is. She definitely puts the ’strong’ in Strongin!

The book followed her and her family’s struggle trying to save her oldest son’s life. From birth he was diagnosed with a very rare disease called Fanconi Anemia. In order to save Henry, Laurie and her husband, Allen, tried new and controversial procedures. The book did go into some medical details, but it was mainly about raising awareness for families in this unfortunate situation.

I found it truly inspiring how the Strongins would fight through everything with a smile, especially Henry who probably enforced this. They truly made the best of Henry’s short life as they could. In English class we are currently exploring what a true hero is. This story contains many heroes. Laurie is definitely a hero for putting herself through pain in efforts to reduce pain for Henry.

This book taught me that a hero cannot always survive. A hero tries his or her very best to stand up to a seemingly unbeatable force. Of course, people love to see a hero rise above and beyond this obstacle, but sometimes he or she just cannot do it. Yet, that hero keeps fighting until the very end, and most importantly, they go down not only fighting, but with happiness in their efforts.

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Monday, May 10, 2010

Allie’s Awesome Reading

Saving Henry by Laurie Strongin

Quarter 4 Book 2
In this extremely moving novel, a dedicated mother explains her son’s illness, fanconi anemia, a rare illness that runs in Jews. I feel so lucky to have had the opportunity to read this spectacular book. I never knew it was possible for one human to love another so passionately. Strongin was the first woman to try pre-implantation genetic diagnosis (PGD), a procedure in which she had to inject herself with various hormones to create eggs with a perfect match to Henry and without the gene for FA. This mother sacrificed so much for her child including, TIME, money, body strength, and her heart. Besides learning about their relationship I learned about life-changing medical procedures in a can’t-stop-reading fashion. I could connect with Henry and his interests because one of his favorite places is also one of mine: Rehobeth beach in Deleware. I give so much credit to Strongin who has created a foundation in her son’s name which i hope to donate to someday.
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Saturday, May 1, 2010

Healthy Attitudes

Below is a review of Saving Henry that appeared in The Jerusalem Post on April 23, 2010.
23/04/2010 16:58

It’s 4 a.m. Eastern Standard Time or 11 a.m. Israeli time on this seemingly endless US Airways flight from Philadelphia to Tel Aviv. And I’m crying.

Saving Henry
By Laurie Strongin | Hyperion | 271 pages | $22.99

It’s 4 a.m. Eastern Standard Time or 11 a.m. Israeli time on this seemingly endless US Airways flight from Philadelphia to Tel Aviv.

And I’m crying.

I’ve just reached page 246 in Laurie Strongin’s Saving Henry: A Mother’s Journey, and her oldest son Henry Goldberg has just died.

It’s not as if the seven-year-old’s death came as a surprise – it was clear almost from the beginning of the book that the youngster’s chances of survival were slim – but I found Strongin’s matter-of-fact chronicling of her and her husband’s almost mythic struggle to save their child from the killer genetic disease Fanconi anemia moving in the extreme.

Or maybe my tears stem from the presence on the plane two seats away of Noam Mechtinger, my youngest grandchild, who is only somewhat younger than Henry when he died.

The feelings I often experience when reading a Holocaust memoir – how did the person manage to survive in the face of such extreme adversity and hardship and would I have had the inner strength to make it – play out here.

I can’t help but wonder if my wife and I would have possessed the same amazing fortitude, the singlemindedness to persevere in the struggle to save one of our own children that Laurie Strongin and Allen Goldberg displayed.

It’s not only that their oldest child’s illness consumed the lives of the Washington, DC, family with endless trips to hospitals and doctors’ offices in Washington, Baltimore, Minneapolis and Hackensack, New Jersey. Or that her husband decided to forgo the search for a new job after being laid off to be at his son’s side during his long ordeal.

Or that as a result of a new medical procedure, the couple tried nine times – in vain – to make an embryo, through in-vitro fertilization and genetic testing, that would produce a disease-free child whose stem cells could save Henry’s life. The anguish they suffered cannot be quantified, but the scope of their efforts to save their son can be appreciated in some of the numbers provided in the book. In four years of IVF, Strongin had 353 injections, produced 198 eggs but still did not get pregnant. They spent almost $135,000, most not covered by health insurance.

But they were not only driven by medical realities, but also by an obsession to provide their son with days of joy, perhaps to try to compensate him for his suffering (for example, he spent a whole year in isolation) or maybe because they feared his days would be few. As a result, Henry met president Bill Clinton, Baltimore Orioles star shortshop Cal Ripkin and the boy’s biggest hero, Batman (an actor at the Six Flags America theme part near their home). And the family spent many days on special trips to Disney World, other theme parks and toy stores.

In the end, the couple endured the unendurable. “We gave it all we had,” Strongin writes. “We worked with the world’s best doctors. We hoped. We were brave. We persevered. And despite all that it didn’t work.”

But because of their experience and the inspiration they provided to others, other parents tried the new medical procedures and their children lived. And in 2003, Strongin and Goldberg founded the Hope for Henry Foundation, which provides sick kids with fun and entertainment.

This book touches on the struggle in the US over stem cell research, but it is really about a mother and a father’s heroic efforts to save their child.

Although Strongin and Goldberg failed to save Henry, they took part in an experimental procedure that apparently has brought closer the day when fewer children will fall prey to this terrible disease.

Most important, in so doing, they fought the good fight. What more could any of us want inscribed on our tombstone?

The writer is arts editor at Washington Jewish Week.