c. 2006 Religion News Service

(UNDATED) Sophia Boyer doesn’t look as sick as she is. On a good day, the 1-year-old crawls laps around the family room, cheerfully keeping up with her older sisters, Abigail, 3, and Tatum, 2.

You would never know that Sophia’s liver is attacking itself.

Her parents, Laura and Brian Boyer of Depoe Bay, Ore., are doing everything they can think of to raise money for their daughter’s liver transplant. They have plastered coastal communities with fliers and put labeled boxes at cash registers to collect coins. They’re also enlisting newspapers, television and radio.

Cases such as Sophia’s raise a number of ethical questions. What about the scores of children nationwide needing expensive medical care whose parents don’t have access to the media, business owners or potential contributors? Or teenagers who aren’t as photogenic as Sophia? Or adults with no one to plead their case?

Families facing these circumstances must decide whether to go public with their financial needs. Reporters and editors must choose between competing pleas and decide whether to publish the story. And media consumers _ readers, viewers or listeners _ must decide whether to contribute money to a particular child.

Sophia has alpha-1 antitrypsin deficiency disorder. One of her physicians, Dr. Sean Rash, describes it this way: Alpha-1 antitrypsin is a protein that is made by the liver and circulates in the blood. In some people, the lack of this protein leads to liver and lung disease. Sophia, her doctors say, needs a transplant by December.

Because this condition is genetic, Sophia’s family underwent tests. Her sister Tatum has the same deficiency but has shown no symptoms.

Once the tests were done, the Boyers’ private insurance carrier canceled Sophia and Tatum’s coverage because they had a pre-existing condition. Now all the Boyer children are covered by the Oregon Health Plan, which will cover 80 percent to 90 percent of the costs of Sophia’s liver transplant. Laura Boyer estimates that the family will have to pay about $100,000 in out-of-pocket costs. Much of that will cover lodging and travel to and from Seattle, where the surgery will take place.

“It’s all about timing,” Laura Boyer says. “We’ve always struggled, but this caught us in transition.” Her husband is self-employed, and his mortgage brokerage business has been stumbling. Right now, he is trying to launch a house remodeling and construction business.

The family lives in a beautiful but modest home that overlooks the ocean. They salvaged and remodeled it themselves, she says, and have refinanced it to help pay off their debts.

“We don’t want to lose it all,” Laura says. “We are in monster debt.”

As the Boyers see it, they have made great sacrifices for their family, including the decision to send Laura’s son, Everett, 9, to live this year with relatives in Las Vegas so that Sophia’s illness won’t disrupt his school year.

The family also has enlisted the help of the Children’s Organ Transplant Association, which is based in Bloomington, Ind. In its 20-year history, the charity has helped 1,000 families, says Rick Lofgren, association president. The association helps families set a fundraising goal, offers tips on organizing local fundraisers, sets up a bank account for contributions and holds those contributions, paying the families’ bills as they come in.

So far, the Boyers have organized a handful of local events, including a booth at a school carnival and a three-day bake sale. To date, they’ve raised about 10 percent of what they need. They are beginning to think about larger projects _ a golf tournament, for example, or a silent auction.

Though the Boyers decided to use the media to raise money, other families don’t. Cassandra Aspinall, a social worker at Children’s Hospital and Medical Center in Seattle, where the Boyers hope Sophia will get her transplant, encourages families to talk through their expectations for news articles about their children.

“Families often ask about the media,” she says. Social workers urge families to think about how news stories might help them _ and how they might make things more complicated.

“Families need to be very clear about what their aim is when going to the media, whether it’s radio or TV or print. They need to talk early on about where they do and don’t want a story to go.” It’s easy for families to lose control of a story once they consult with a reporter, she says.

In the case of Sophia Boyer, The Oregonian found her, not the other way around. But in many cases, it is families or friends of children in need who contact reporters and meet with mixed success. Sometimes a news organization will pick up a story, and other times it won’t _ especially if it has recently featured another child in a similar situation. Editors sometimes ask whether the old argument “we’ve already done that story” should apply when a child’s life hangs in the balance. Others argue that there simply isn’t space _ in column inches or minutes _ to highlight every case of need.

Deni Elliott, who teaches media ethics at the University of South Florida, says a reporter or editor should consider the newsworthiness of a particular child’s case.

“There may be a dozen more cases in the market area who are equally deserving,” she says, “but the person who needs it isn’t as appealing or their family is more concerned with their privacy or not as media savvy.

“It is patently unfair that some people in need get a transplant and others don’t,” says Elliott, who made a documentary on the subject called “A Case of Need.”

“The news media participates in that same kind of institutional unfairness by broadcasting in the case of some and not in others,” she says.

Kelly McBride, an ethicist at the Poynter Institute, says it might be more fair for a newspaper to run every story and limit each to the same short length, say 8 inches. She doesn’t, however, know of any newspaper that has such a policy.

“If you do this, you negate some of the effectiveness, but you’ve traded one harm for another,” she says. “You’ve traded the unfairness of the day’s news for a system that will at least give everyone access.”

A story such as Sophia’s hints at, but often doesn’t highlight, larger questions about the health care system in the United States.

“When stories about the little kid in need run,” Elliott says, “very rarely do you see the same minutes or number of inches on what we are doing with the health care system.”

There is an obligation, McBride says, “to hold the system accountable. … What should a family be expected to sacrifice? What costs should the system pick up? … Why are there so many holes in the system? That is a big, messy story.”

KRE/JL END HAUGHT

(Nancy Haught is a staff writer for The Oregonian of Portland, Ore.)

Editors: To obtain photos of Sophia Boyer and her parents, go to the RNS Web site at https://religionnews.com. On the lower right, click on “photos,” then search by subject or slug.