Conceiving a Sibling Donor Match

Posted by Phin Upham

The article, “The Made-to-Order Savior,” by Lisa Belkin is a touching story of two children with Fanconi anemia, a rare genetic disease that affects the bone marrow. Both children are each from different families, but their parents have more in common than having children with the same disease. The parents are the first people in the world to use invitro fertilization to try and save their children.

In order to save a Fanconi child, he or she needs a bone-marrow transplant from a sibling donor who is a perfect match. But even if a second child is born to save the first, it’s not a guarantee that the second will be a perfect match. For this reason, the two families, the Strongin-Goldbergs and the Nashes, embark on a long journey and only one family will succeed. The article opens up at the hospital waiting room where both families wait for the “new cells to take root.”

The author writes, “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.”

The article goes into the ethical dilemma over the decision to bring a child into the world just to be a donor.  The author writes, “It is human nature to do everything to save a life and just as human to agonize over everything we do.” The article reveals how far parents will go to save their children. It details the journey the parents took with various doctors and just how complicated it can be to try to bring a perfect donor into the world to save a child with Fanconi anemia. Both stories are equally touching, heartbreaking, and incredible. I highly recommend it.

Read the entire article: http://www.nytimes.com/2001/07/01/magazine/01FANCONI.html