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Finding hope

Laurie Strongin’s uneventful pregnancy belied the reality of her firstborn’s medical condition. Born in 1995, Henry had Fanconi anemia, and Laurie and her husband, Allen Goldberg, quickly learned that a matched sibling blood and marrow donor was his only hope.

Image courtesy of Hyperion.

In 1996, while Laurie was pregnant with their second child—healthy but not a genetic match—the couple learned about the possibility of using preimplantation genetic diagnosis (PGD) and in vitro fertilization (IVF), guaranteeing a healthy child and a match. The decision to proceed was easy; their family again would grow, and Henry could get his blood and marrow transplant (BMT) at the University of Minnesota, a leader in using BMT to treat Fanconi anemia.

“I decided early on that I wanted to keep a journal about the entire experience so that when it did work, I could share information,” Strongin says. “That was my way of giving back in exchange for being first.”

Earlier this year, Strongin turned her journal into the book Saving Henry, which chronicles—from a medical perspective, and perhaps more important, from the perspective of a normal, superhero-loving kid—Henry’s life and early death.

For the Strongin-Goldberg family, IVF and PGD failed on numerous occasions, and University pediatric hematologist/oncologist John E. Wagner, M.D., determined that Henry was too sick; they had to proceed with an unrelated donor. Because of the procedure, Henry and his family gained another 2½ years together.

Saving Henry recounts the family’s journey and celebrates Henry’s life. “The book started off as a therapeutic outlet,” Strongin says, “but then it became a story of hope and what it’s like on the medical frontlines.”

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