Group Seeks Bone Marrow Donors to Save 23 Lives

As many as 23 Ventura County residents with life-threatening blood diseases are in need of bone marrow transplants, said the head of the county branch of Life-Savers Foundation of America.

Like other Life-Savers branches nationwide, the group is stepping up efforts to find compatible matches for the residents whose lives may be saved by a transplant if donor matches can be found.

Lynnette Chandler, who runs the county’s Life-Savers branch from her Camarillo apartment, said many patients and their families prefer to keep their search private because of the burden of coping with illness.

But others, such as Tim Steinmetz of Thousand Oaks, have turned to the public for help.

Steinmetz worked as a mechanic until two days before his 25th birthday in March, 1989. Then, after a trip to the emergency room for what seemed to be a severe backache, he learned that he had acute lymphatic leukemia.

After chemotherapy and radiation treatments, Steinmetz’s leukemia went into remission for nine months, but the disease eventually returned. In February, doctors at the City of Hope in Duarte told Steinmetz, now 26, that he needs a bone marrow transplant to save his life.

After unsuccessfully seeking a bone marrow match among family members, Steinmetz’s family and friends, joining an increasing number of patients seeking donors nationwide, are knocking on doors, handing out flyers and seeking help from the public to find a donor match.

“They all enjoy it,” Steinmetz said, “but I think it’s a lot of work.”

A committee made up of Steinmetz’s family and friends is holding a series of fund-raisers to help pay for the blood tests, which cost $75 apiece.

At the very least, Steinmetz said, his appeal will help increase the number of prospective donors in a nationwide blood marrow registry, perhaps eventually finding a match for him or for someone else.

But the first step is to “educate the public about the process, Steinmetz said. “It’s not a big deal, it doesn’t involve surgery,” he said.

Bone marrow donors must be in good health and between the ages of 18 and 61. The procedure is usually done under general anesthesia. About 3% to 5% of the body’s marrow is extracted from the hipbone through a non-surgical procedure. The procedure usually requires an overnight hospital stay, and the donor is able to resume normal activities within a day.

Cindy Nelson, a member of Steinmetz’s fund-raising committee, said the group has several fund-raisers scheduled through May to pay for donors for Steinmetz. The list of events includes an effort by 2-for-1 Photo Shop on Avenida de los Arboles in Thousand Oaks, which will donate $2 per roll of film developed on Monday and Tuesday; a May 5 swap meet at the Albertson’s market at 1736 E. Avenida de las Arboles; and a concert at the Newbury Park Holiday Inn on May 6. And April 22, blood tests will be held for Steinmetz from noon to 5 p.m. at the Holiday Inn in Newbury Park. Although his family is seeking to raise enough to pay for everyone who shows up for testing, those who can are urged to pay for their own tests.

The Steinmetz family is working with Life-Savers Foundation of America, a Covina-based nonprofit group that serves as the recruiting arm of the National Marrow Donor Program, a national registry for bone marrow donors.

Although about 100,000 donors are registered, Life-Savers spokeswoman Susan Rafkin said about 250,000 donors must be registered before a bone marrow match can be found for everyone who needs one.

For Steinmetz, who travels to the City of Hope several times a week for chemotherapy, time is a major concern.

“I need something to happen real quick,” he said.

Two other Ventura County residents with life-threatening illnesses have worked with Life-Savers in seeking bone marrow donors.

Amanda Chandler, 10, the daughter of Life-Savers branch head Lynnette Chandler, was 6 years old and living in Ft. Worth when her aplastic anemia was diagnosed.

To be closer to the advanced medical care available in Southern California, Chandler, 41, moved with her daughter to Camarillo 3 1/2 years ago and founded another group, Children for Tomorrow, in an effort to find marrow donors.

Although Amanda has never been hospitalized for her illness, she still needs a bone marrow transplant to prolong her life, Chandler said.

Chandler is an unemployed waitress who volunteers her time and has given over most of her two-bedroom Camarillo apartment to recruiting donors and raising dollars for Life-Savers.

In addition to seeking a donor for Amanda, whose photograph adorns posters throughout the county advertising for blood donors, Chandler speaks to community groups and helps organize fund-raisers to pay for blood tests for prospective donors.

“People call every day wanting to register or to see what they can do to help,” Chandler said. “I go out and talk to service clubs, hold bake sales, speak to community groups. . . . I’m going after anybody and everybody that can help us.”

The family of Thousand Oaks High School sophomore Dean Schmitt, 15, who has also worked with Life-Savers, is trying a different approach.

Dean, a competitive swimmer who was found to have leukemia in May, is now in remission but is suffering from complications, said his father, Ralph Schmitt.

After testing about 200 people--including relatives and others--to find a donor, the family has gone back into family history, researching tissue types and tracing family genealogy to narrow the search because of Dean’s unusual tissue type, Ralph Schmitt said.

“It looked like the odds were about one in a million instead of one in 20,000” to find a donor, Schmitt said. “So we’re looking at my family background because I have an unusual tissue type that makes the match hard to find. . . . It’s kind of a trial-and-error-type game.”

Schmitt said family members are encouraged that they will soon find a match for Dean.

What would make the search easier for all those who need donors, medical officials say, is if more potential donors come forward to be tested.

“Hopefully, we’ll get to the point one day where virtually everyone can find a match,” said Charles Mathews, a spokesman for the City of Hope in Duarte, which expects to perform about 100 bone marrow transplants this year.

Steinmetz’s family said they hope he is among those who find successful matches.

But, said Beverly Steinmetz, Tim’s mother, “regardless of what happens, we’re going to continue. Too many young people are dying every day needlessly because they need a transplant. Whatever happens, we’re going to continue to work with it.”

Tim Steinmetz said he believes that if people are educated about the need and the simplicity of the blood-testing and donating procedure, more donors will come forward.

“People have just got to be educated,” Steinmetz said. “Then they’ll save somebody’s life.”

Ventura County residents who wish to become donors may call Life-Savers at 1-800-950-1050 or the National Marrow Donor Program at 1-800-654-1247.

In Ventura County, Pleasant Valley Hospital in Camarillo does blood tests. Hospital spokeswoman Carol Keochekian said the hospital donates staff time to draw blood samples, which are sent to a laboratory for testing.

People interested in arranging for a blood test at Pleasant Valley Hospital should call Chandler at 987-6935.