Healthy attitudes

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 savetheir child.
Although Strongin and Goldberg failed to save Henry, they took part inan experimental procedure that apparently has brought closer the daywhen 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.