c. 2007 Religion News Service

PORTLAND, Ore. _ Daniel Kerner checked into a Portland hospital last fall and got stem cells from dead fetuses injected into his brain. He’s the first person in the nation to undergo this procedure, the first patient in a clinical trial that tests every ethical, religious and scientific boundary.

He recently celebrated his seventh birthday, a little boy in blue jeans defying an incurable disease.

His parents praise God and science in equal measure.

They know this type of biomedical work may sound bizarre or immoral in the abstract, but not when it comes to saving their son. Stem-cell research isn’t a political issue to them, as it is for Congress and President Bush. It’s personal. For the Kerner family, the only moral choice is to seek miracles wherever they can.

“There are so many people praying for Daniel right now,” says Marcus Kerner, Daniel’s father. “I’m sure if you asked some of them about the science, they’d say, `Yes, we’re opposed to that.’ But they want to save a life.”

Daniel was a healthy baby who developed language problems as a toddler. Doctors eventually diagnosed him with Batten disease, a rare and cruel neurodegenerative disorder that leads to incapacitation and death.

The Kerners watched their bright-eyed son wilt like a cut flower. They scoured the Internet and found no hope.

Then in 2005, the U.S. Food and Drug Administration approved a clinical trial for up to six children with Batten disease. Doctors would inject purified human fetal neural stem cells into the patients’ brains. The hypothesis, based on animal experiments, was that the stem cells might generate a certain enzyme and fight the disease.

Daniel was selected as the first. It was an easy call for his parents, though the surgery was dangerous and the stem cells came from stillborn or aborted fetuses. Their son was going blind and unable to eat or walk on his own, and a swift death was otherwise inevitable.

What’s more, the Kerners suffered two miscarriages years ago. They felt devastated by them, like all of that effort and hope was for nothing. When the opportunity arose to help their son using fetal cells, they liked the idea of something hopeful coming out of a lost pregnancy.

Daniel underwent surgery on Nov. 14, 2006, at Doernbecher Children’s Hospital at Oregon Health & Science University. Two weeks ago, the Kerners returned to Portland from their home in Orange County, Calif., for a follow-up.

Doctors warn against drawing any conclusions from a single patient. Still, they’re thrilled with Daniel’s progress.

“The big deal about this trial is not that it’s `the first,”’ says Dr. Nathan Selden, lead surgeon and the study’s co-principal investigator. “The big deal is that we’re trying to fight a disease that, the day before the surgery, was utterly hopeless.”

Selden also sees the importance of faith to the Kerners _ and to so many others seeking medical treatment. People’s faith and values don’t work in opposition to science; more often, they go hand in hand.

Sometimes, Selden muses, “we may try too hard to separate the two.”

Not all stem cells are the same, as researchers hasten to point out. Neither is all research. The neural stem cells injected in Daniel’s brain differ from the embryonic stem cells debated in Congress. Each biomedical experiment raises its own ethical questions and risks.

And not all research leads to cures.

Families want miracles that science can’t always deliver, says Dr. Markus Grompe, director of the Oregon Stem Cell Center at OHSU. It can take years to lay the groundwork for a clinical trial, and years longer to know whether a treatment is safe or effective.

But every breakthrough generates hope _ even just to buy a little time.

“How do you quantitate hope?” Grompe asks. “That is totally in the eye of the beholder.”

Daniel Kerner smiles at his physical therapist Shana O’Brien, in a cheery room on the seventh floor of Doernbecher. He labors to sit up, roll from his tummy onto his side and push buttons on a music machine. O’Brien cradles and assists him, cooing words of praise.

Daniel is frail in his fleece vest and black sneakers. His shorn hair doesn’t yet cover the drill marks on his skull. Even as a stranger, watching this child struggle to relearn the skills of infancy is heartbreaking.

His parents, however, beam in the waiting room.

They praise God, they love their doctors, they love Portland. This trial is the best thing that’s happened to their family in years. They revel in their son’s progress, and they’re optimistic that other families will benefit someday.

They have hope.

They have Daniel.

(Susan A. Nielsen writes for The Oregonian in Portland, Ore.)

KRE/LF END NIELSEN