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Tuesday, March 2, 2010

Having a Child to Save Another

Yet again Lisa Belkin beautifully captures the impact of Henry’s life. This article appeared in Lisa Belkin’s excellent blog on adventures in parenting.

Having a Child to Save Another
By LISA BELKIN

Back when I was a medical reporter for The Times, Laurie Strongin and her husband, Allen Goldberg — and most of all their son Henry — became the faces I saw whenever I wrote about medical milestones. I met them when they were one of the first two families to try a new technology called preimplantation genetic diagnosis, or P.G.D., to have a baby who could donate the bone marrow that Henry, who was born with the genetic disease Fanconi anemia, needed to live.

What Laurie and Allen did was controversial at the time. Actually, some people think it still is. Congress shut down the lab that was working on P.G.D., calling it illegal stem-cell research. That led to an 18-month delay that may well have cost Henry his life. Laurie went through nine in vitro fertilization cycles before and after that pause, and each time the embryos transferred were not only free of the genetic flaw that threatened Henry but were also his bone-marrow match. Nine attempts failed to take, and Henry had to settle for an imperfectly matched unrelated donor. He died in 2002 at the age of 7.

Since then Laurie and Allen have been passionate about the following: each other; their two younger sons, Jack and Joe; the Hope for Henry Foundation, which they created to bring smiles (and distracting electronic gifts) to children who spend too much time in the hospital; and spreading the word. Embryo and stem-cell research are not about petri dishes and microscopes, they say, but rather about little boys who idolize Batman and Harry Potter. P.G.D. is not about designer babies or children as spare parts, but rather about parents who will fiercely love the child who is conceived to save another child they fiercely love.

Laurie writes of all of this in her new book, “Saving Henry: A Mother’s Journey,” which is out today. It is about love and science and hope and disappointment. It is a timely reminder that the reason so many of our children are healthy is that other children died trying. As Laurie writes:

Behind every medical breakthrough are the pioneers who undergo risky, unproven treatments that fall short of their promise. It is through families like ours that doctors come to understand and perfect lifesaving treatments. Learning from our case, the doctors were able to improve the technology, and eventually science caught up with our dream. Just as research on others who came before us gave us hope for Henry, in a way we have paid our debt to them by giving others new hope.

Laurie and Allen know this is true because they have heard from some of these families. One of those is the Kelleys, whose son, Hunter, was also born with Fanconi anemia. Perhaps the most moving moment of my professional life was when Laurie and Allen shared a letter they received from Hunter’s father, who wrote about reading the magazine article I wrote about their fight to save Henry. It read in part:

For a year and a half we searched for answers as to how to help Hunter. In 2001 we learned that P.G.D. was now available to F.A. patients. It was about this time my wife read your New York Times magazine article. We immediately decided we had to give P.G.D. a try. After four cycles and many ups and downs, we got pregnant.

On Dec. 9, Cooper Kelley was born. A perfect match for Hunter. On Jan. 21, Hunter underwent a transplant at University of Minnesota. Today we are back in Birmingham, and Hunter is outside shooting basketball.

The reason for writing this letter is to thank you and especially to thank Henry. You see, if we had never read that New York Times article, we would have never tried P.G.D. Your determination to succeed at P.G.D. gave us inspiration. Henry did not die in vain. Henry is a pioneer who has and is saving lives every day. I can only imagine what it is like to lose a son. Hopefully you can find some comfort in knowing without a doubt you and your son helped save our son’s life.

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