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"I think for those of us who have grown up in the church, it takes a miracle rescue touch from God to break out of going through the motions. It takes great humility to say 'What I've been doing hasn't been working and it hasn't been real.' " Nancy began by telling God, "It's been so long since we've talked and I don't even know how to do this or why You'd want to talk to me, but … can we start talking?"

For Nancy, talking meant committing to regular Bible study. Slowly, she felt the hypocrisy being replaced by a hunger to know God more. It seemed that those who knew Him best had suffered. So one day in the car, Nancy prayed that prayer—to know God better even if it meant suffering.

Years later, as Nancy held Hope, she thought of that prayer. She also considered a recent Bible study she had done on the book of Job. At the time, she wondered if she could do what Job did. She recalled the passage where God said, "My servant Job will be faithful to me no matter what."

"I remember being so challenged by that," she says. "I couldn't imagine God ever having that confidence in me." As Nancy looked at Hope, she thought, Here's my chance to respond to the worst thing I can imagine in a way that is pleasing to God.

It wasn't easy. Nancy had to make that decision over and over again during the next few months. Her grieving didn't get easier. Hope wasn't healed. The pain didn't lessen.

But each day, Nancy tried to respond faithfully despite her loneliness and grief. When people offered to drop off meals, she and David invited them to stay. When people expressed pity at their circumstances, she asked them to celebrate their daughter's life. "Whereas before we talked to our neighbors about our lawns, we never had meaningless conversations anymore. We were talking about life and death, and Jesus, in a way we never had before." In preparing for her own loss, Nancy began to help others.

On her 199th day of life, Hope took her last breath.

Both parents must be carriers of the recessive gene for Zellweger Syndrome to occur. The Guthries decided David would have a vasectomy to prevent another pregnancy. Only 1 in 2,000 vasectomies fail, so the couple felt secure.

But one year after Hope died, Nancy was pregnant again. Pre-natal testing revealed their third child would also have Zellweger Syndrome.

Time magazine interviewed Nancy and David for an article in which the writer compared their plight to that of Job's in the Old Testament. The article quotes an entry from Nancy's journal: "[Like Job], we often cannot see the hidden purposes of God," she wrote. "But we can determine to be faithful and keep walking toward Him in the darkness."

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