Copyright 2004 Newsday, Inc.
Newsday (New York)
May 23, 2004 Sunday
NASSAU AND SUFFOLK EDITION
SECTION: NEWS; Pg. A08
LENGTH: 840 words
BYLINE: PAUL VITELLO

They go to church; put money in the collection envelope. He belongs to the Knights of Columbus. Their kids have taken the holy sacrament of confirmation. They consider themselves moral people. Yet Tom and Jill Karlya of Medford know they are defying Roman Catholic church doctrine when they hope for a breakthrough in embryonic cell research that might help their daughter, Kaitlyn, 14.

For all they know, the bishop here could issue an order tomorrow denying communion to - and jeopardizing the eternal salvation of - anyone who votes for a political candidate who supports stem cell research, as Bishop Michael Sheridan of Colorado Springs, Colo. did last week, threatening also any voters who support candidates advocating gay marriage, euthanasia or abortion rights.

It is a dilemma facing many members of religious organizations that have condemned the use of embryonic stem cells in research. In the doctrines of those churches, such research is "morally unacceptable," to quote the U.S. Conference of Bishops, because it destroys tissue that is potentially the germ of a human life.

In the scientific world, where stem cell research represents the best hope for treating spinal cord injuries, Parkinson's disease, Alzheimer's disease and diabetes, the issue is not seen as so morally freighted because the embryos from which stem cells are extracted are the product of artificially inseminated eggs never planted in a woman's uterus, and otherwise destined for discarding.

Kaitlyn has lived with diabetes since she was 2 years old, though to say she "lives with" it - a phrase that causes her parents to cringe - ignores the peril of her daily life. It is not a homey state of living. It is a lifestyle more akin to being in an abusive union with a killer. A misreading of a blood test, a sudden change of sugar chemistry - and the diabetes one lives with can dispatch one quickly into coma and death. People with diabetes, carrying on what may seem like normally healthy lives, sometimes die in their sleep.

That unpredictability has required Kaitlyn's mother to form special bonds with school nurses, to meet with each of Kaitlyn's elementary school teachers, to make special arrangements with her dance teachers and soccer coaches, to notify the parents of each of her classmates - all to prepare against the unforeseen trap into which she knows her daughter's body chemistry might fall at any time. Kaitlyn takes insulin. She checks her blood sugar level 10 to 12 times a day.

Stem cell research is nowhere near a cure, but diabetes specialists say embryonic stem cells - which have the capacity to transform into many types of cells - may be transformable into cells that produce insulin. (On the other hand, adult stem cells - which can be taken from living donors, and research involving which the Catholic Church has no objection to - may not be as successful in making that transformation, according to recent studies).

"Look, it is not the only avenue of research," said Tom Karlya, the father. "It just happens to be one with promise ... "

And it is safe to say there would be more promise, and possibly progress, if there weren't so many obstacles from the Catholic church, from conservative Christian churches, from a coalition of various anti-abortion groups - all of which contributed mightily to the decision by President George W. Bush in 2001 to severely restrict federal funding for embryonic stem cell research.

"If the church says it is OK to take the organs from a person who is brain dead and give them to someone else so that that person will live," said Tom Karlya, "I don't see the difference in using [embryonic] cells that will otherwise be thrown away ... " The Catholic Church has never raised objections to organ transplantation.

Karlya was a professional actor when Kaitlyn was first diagnosed. He made commercials, had parts on various TV shows, and played the role of Tina's godfather in the Broadway production of "Tony and Tina's Wedding." On her first day in the hospital, 2-year-old Kaitlyn looked up at her father from her bed, intravenous tubes in both her arms, her hair matted, and said, "Daddy?"

"What, honey?" he said, bending over the railing of the bed.

"Fix," she said.

Soon after, Karlya left the stage and became active in seeking a cure for his daughter; he now serves as the chief fund-raiser for the New York office of the National Diabetes Institute Foundation, a group affiliated with the University of Miami School of Medicine's diabetes research center. This year, he raised more than $3 million, a portion of which will go toward embryonic stem research at the Miami center.

"My faith is simple," he said the other day. "I don't believe that miracles happen with thunderclaps and lightning. I believe they happen when everyday people do extraordinary things to help each other."

Neither he nor Kaitlyn's mother believe they will suffer damnation for hoping for a cure for their sick child. "At the end of the day, I think God asks you, 'Did you do a good job?' I just want to be able to say yes."