September (Web-only) 2002

ARTICLE TOOLS

Find similar articles E-mail this page

In July 2000, Christianity Today published Nancy Guthrie's story, "Praying for Hope," which told how of how she and her husband, David, struggled with their daughter's genetic illness—and how they learned to pray for a child who was going to die.

Their story, of course, continued, and was also told in Time (free), USA Today, and other publications. Now Guthrie, who has worked in the Christian publishing industry for the last 18 years, tells the story and what she's learned from it in her latest book, Holding on to Hope (Tyndale).

A few weeks before the birth of Hope, there was a fire in your neighborhood. What happened that day?

I think it's the same question that all of us ask when we see something that we consider to be horrific or a tragedy. We look at it and we say, what would I do if that happened to me? That's what I thought about that day. What would I do if the house that I lived in had been destroyed by fire?

Two weeks later you gave birth to Hope and learned a couple of days after her birth that she had what's called Zellweger Syndrome.

It's a very rare metabolic disorder, and I had never heard of it before. It's what's called a paroxysomal disorder, which means is that in every cell of Hope's body she was missing what's called paroxysomes. The best way I know how to describe them is that they're like trash men. They take out the trash of the cells. And there's one kind of trash there especially important to take out, which is long-chain fatty acids.

On Hope's second day of life, the geneticist came to our room. They had a long list of small problems. She was very lethargic. She'd hardly even cried. She couldn't suck. She had clubbed feet. She had a real large soft spot. She didn't move much. Lots of small problems that ...