Henry Strongin Goldberg was the first to arrive in Minneapolis. His parents decorated his room on the fourth floor of the Fairview-University Medical Center with his inflatable Batman chair, two Michael Jordan posters, a Fisher-Price basketball hoop and a punching bag hanging from the curtain rod over the bed. They took turns sleeping (or not) in his room for more than a month. It was too risky for his little brother to visit, but there was a playground across the courtyard, and if Henry, who was 4, stood at the window and Jack, who was 3, climbed to the top of the slide, the boys could wave to each other.
Henry had lost his hair by the time 6-year-old Molly Nash moved in down the hall on the bone-marrow transplant unit. Soon she, too, was bald. The two children had always looked alike, just as all children with this type of Fanconi anemia look alike, with their small faces and small eyes and bodies that are tiny for their age. The “Fanconi face” is one more reminder of the claim of the disease. Over time, Fanconi children also come to sound alike, with a deep, mechanical note in their voices, the result of the androgens they take to keep the illness at bay. Once their scalps were bare, Henry and Molly looked nearly identical. But there was one invisible difference between them — a difference that could mean everything.
These two families, the Strongin-Goldbergs and the Nashes, had raced time, death, threats of government intervention and (although they cringe to admit it) each other, to make medical history. The best chance to save a Fanconi child is a bone-marrow transplant from a perfectly matched sibling donor. Many Fanconi parents have conceived second children to save their first, hoping that luck would bring them a match. These two couples became the first in the world not to count on luck. Using in-vitro fertilization, then using even newer technology to pick and choose from the resulting embryos, they each spent years trying to have a baby whose marrow was guaranteed to be an ideal genetic fit.
One family would succeed and one would fail. One child would receive a transplant from a perfectly matched newborn brother and the other from a less well-matched stranger. One would have an excellent chance of survival; the fate of the other was not as clear. Their parents, now friends, would find themselves together in the tiny lounge at the end of the transplant hall, waiting for the new cells to take root, sharing pizza and a pain that only they could understand. READ MORE