Tales Of Medical Need Multiply

Most Ill Children Don't Get The Kind Of Attention That Brandy Stroeder Has Received To Raise Money For Lifesaving Treatments

By Julie Tripp, Trevor Maxwell and Lindsey Wise

of The Oregonian staff

Ten others quietly slip through the cracks, some dying before getting a fighting chance at life.

This is Susan Tolle's most trying paradox.

Thursday, Brandy Stroeder, an 18-year-old McMinnville girl with cystic fibrosis, received word that hotel magnate Mark Hemstreet agreed to help pay for a potentially lifesaving liver and lung operation. Her insurance, the state- and federally funded Oregon Health Plan, has refused to pay for the $250,000 operation.

"A part of me rejoices that this young lady gets a second chance. But part of me says there are all these invisible people that aren't getting this attention," said Tolle, director of the Center for Ethics in Health Care at Oregon Health Sciences University.

With statewide media attention, the reach of the Internet and a responsive community that has raised more than $60,000, Stroeder -- who continues to fight the state's decision -- is one of the lucky ones.

How To Help

Several McMinnville fund-raisers are planned for Brandy Stroeder:

1. July 2: Carwash at Bank of America 1650 N. Oregon 99W, McMinnville, 503-472-9303.
2. July 9: Car bashing at Furniture Outlet, 1621 N. Baker St., 503-435-0555.
3. July 14: Spaghetti feed and auction at Patton Middle School, 1175 N.E. 19th St.
4. July 16: Garage sale at Citizens Bank, 455 N.E Baker St., 503-474-9441.
5. July 21: Benefit Night at 3rd Street Pizza Co., 433 N.E. Third St., 503-434-5800.
6. Information: Call Patty Cooper at 503-435-0941
7. Donations may be sent to the McMinnville Bank of America, 1650 N. Oregon 99W, McMinnville, OR 97128

Although philanthropy for health care causes is generally up in the state and the nation, most children -- mostly poor, some uninsured -- don't get the kind of public response or media attention needed to raise hundreds of thousands of dollars for lifesaving operations.

"The resources required are out of reach for a lot of people," said Father John Tuohey. As chairman of applied health care ethics for Providence Health System in Portland, Tuohey serves on a committee that evaluates candidates for heart transplants. "We see people all the time who are not insured and cannot make that public appeal."

At Doernbecher Children's Hospital, "We hear of two or three stories a year where funds have been set up for a patient and their family," said hospital spokeswoman Christine Long.

Multiply that by countless stories in dozens of other communities throughout the state. Gina Geppert of Hubbard, for example, worries about who'll help her 5-year-old son.

She and her husband, a self-employed carpenter, are uninsured and already have spent thousands of dollars getting treatment for their son Carl's immune deficiency problems. The mounting bills forced the couple into bankruptcy two years ago. They have since been accepted for help by a Florida foundation, but they still need to raise $10,000.

"We have to come up with the money for a visit to Baltimore, amino treatments, blood work and other things," Geppert said Friday. They turned to the Oregon Community Foundation but were told it isn't equipped to give funds to individuals such as Carl.

"I was thinking that it was night and day in the visibility of these two cases," Greg Chaille, the foundation's executive director, said of Stroeder and Carl Geppert. "How many more are out there?"

A lot, according to Oregon's Make-A-Wish Foundation.

The organization's "wish" load has tripled in the past six years to serve 130 youngsters, thanks to increasing donations from many small donors as well as wealthy contributors, including Hemstreet, Robert Pamplin and Arlene Schnitzer, says director Marcia Franz.

The Community Foundation's Chaille, who tracks foundation giving here, said the number of 1998 dollars going to health care and rehabilitation grew from $4.9 million to $7.2 million, a 47 percent increase. Chaille says foundation donors generally favor giving to health care education, parenting, disease and other prevention efforts.

But individuals also tend to go beyond their normal giving to spontaneously help people -- like Stroeder -- when they are exposed to their pressing needs.

"It's a compassionate response," Chaille said.

Sean Foley of Portland remembers what it was like to have a community rallying around his family after his 6-year-old son, Cameron, was diagnosed with leukemia four years ago. Friends and strangers helped with chores and offered financial and emotional support.

"It's not something I've ever experienced before," said Foley, who has insurance but remembers the bills piling up, even after treatment. "You don't feel alone. You've got a whole community behind you."

Health plans, whether private or government funded, never pay for everything and often pay for only a fraction of the costs of a major operation, said Joyce Stumpf of the Children's Organ Transplant Association. Since its founding in 1986, the nonprofit group in Bloomington, Ind., has helped more than 450 families across the country raise money to pay for organ transplantation.

Thanks to the generosity of friends and neighbors, Foley said, he was able to keep his house and job. Now Cameron's cancer is in remission, and Foley is operating manager at Domino's Pizza in Portland. He is coordinating an effort to raise money for Stroeder by giving $1 for every regularly priced large Domino's pizza sold in the area.

"It's a long, hard road for her," Foley said. "I understand because I've been down that road myself."

When Jeff Leeland of Redmond heard Stroeder's story, he also recalled raided piggy banks, crumpled $5 bills and a community spirit that saved his son's life. Leeland's son, Michael, was less than a year old in 1992 when he was diagnosed with leukemia. His insurance company would not pay for a bone marrow transplant.

"The community just rallied around him," said Leeland, who lived in the Seattle area at the time. "It happened so spontaneously."

The first donation was a handful of dollar bills from a student at the junior high school where Leeland was teaching. Within weeks, the school had organized a walk-a-thon and a raffle, and had even petitioned the insurance company. Volunteers stayed at the family's bank after hours to open donation envelopes. The community raised $227,000 for Michael's operation.

"It was similar to what has happened for Brandy," Leeland said. "I'm always amazed at what communities can do."

Michael is now 8 and plays soccer. His older sister, Amy, donated her marrow for his operation. Leeland wrote a book, "One Small Sparrow," about the family's experience. And he started The Sparrow Foundation, an educational charity that empowers children helping children in medical need.

Leeland praised Hemstreet's pledge to Stroeder, but he said community-oriented drives are more realistic for cases that don't draw as much attention. He advises communities to listen for other people who are in need. By identifying young people who have pressing medical concerns, he said, fewer sick children will fall through the cracks.

"What this generous man did is incredible," Leeland said. "What McMinnville is doing is heroic."

Residents there have been holding bake sales, carwashes and spaghetti feeds, among other things, to raise money for Stroeder's care after the surgery, including a possibly long recuperation in the hospital. McMinnville High School raised $700 from teachers and staff, a feat that was repeated at schools throughout the school district, according to Stroeder's school counselor, Lan Carpenter. And Stroeder's case has been posted on Internet chat boards that encourage others with cystic fibrosis to send cards and notes of encouragement, and offer donations to Stroeder's fund.

"I think when a lot of people with CF read the articles about her, they just start to cry," said Beth Sufian, a 34-year-old Houston attorney with cystic fibrosis. "Her efforts have been very inspiring to others who are having to fight for medical coverage."

Joe Rojas-Burke of The Oregonian staff contributed to this report.

Copyright © 2000 Oregon Live.

This article posted June 30, 2000.