Parents' dilemma complex

At 16 months, Carter Pepper is a compact little guy -- a red-headed tumble of grins and gurgles, curiosity and climbing.

To meet him, you would never guess that in November he was diagnosed with Fanconi anemia, a rare disease that, until the advent of bone marrow transplants, killed most patients by age 12.

In some ways, the disease is similar to leukemia, whose victims often rely on donors from a national bone marrow registry. But in other ways, FA is far worse -- posing the ultimate question: What would you do to save your child?

The doctors have told Carter's parents, Crystal and Josh Pepper, that it would be best for Carter to receive the marrow of a sibling with the same genetic markers -- or stem cells from the umbilical cord.

The problem is, Carter is an only child.

So even though the Peppers have always wanted several kids, they will now be growing their family with a mission -- and the queasy implication that they'll have another child as "spare parts" for Carter. Nothing could be further from the truth.

But having a second child presents other issues as well.

Because Fanconi anemia is a genetic disease, if the Peppers go the traditional conception route, there is a one-in-four chance that the younger child would have FA, too. And, even a healthy baby might not be an exact match for Carter.

This would be determined in a test at about 11 weeks of pregnancy. What would they do if the fetus had FA, or didn't match -- and Carter was getting sicker?

The only way to ensure a genetic match is with in vitro fertilization. But the Peppers face something far more complicated than your basic medical miracle.

Crystal's fertilized eggs would need to be shipped to one of three highly specialized labs in the nation that can perform detailed genetic testing on the zygotes before they are ever implanted. Using technology that could allow parents to choose a child with blond hair and blue eyes, scientists would determine which of the zygotes a) did not have FA and b) would provide a match for Carter. These zygotes would be the ones implanted.

The Peppers' insurance company, for now at least, says it won't pay the $30,000 for each round of in vitro, much less the fancy lab work.

The Peppers certainly can't afford it out of pocket. Crystal, 25, works part time as a certified medical assistant at Rex Hospital; Josh, 24, works for a cedar roofing company.

Right now, Carter is still undergoing tests to determine exactly what genetic variation of FA he has, and therefore what sort of match would work best. That buys them some time, and they'll need it -- to raise money, and to decide what to do next.

"This poses just about every moral question you can think of," Josh Pepper said.

For most of us, such questions are blessedly abstract. For the Peppers, they're all about a redheaded little boy.

For them, the question isn't just: What would you do to save your child? Instead, they ask: What wouldn't you do?

Friends of the Peppers have organized a series of fundraisers to help with Carter's care. A spaghetti dinner will be held from 11 a.m. to 8 p.m. Friday at McCullers Ruritan Club, Ten-Ten Road and U.S. 401 between Fuquay-Varina and Garner. For information about other events, visit caringbridge.org/visit/carterpepper.