The Gift Of Life: Donor Registry Events Seeks To Find Life-Saving Bone Marrow Matches
Zumba instructor Jeanne Warren of Bloomfield has helped organize a bone-marrow registry event this Saturday for a friend with leukemia who needs a donor match to survive. The testing is nothing more than a cheek swab, and the transplant needed by Warren's friend requires no surgical procedure. Here Warren leads a class at the Conference of Churches' Living Well Center in Hartford. (Patrick Raycraft / Hartford Courant / January 13, 2010)
Jennifer Jones Austin had been feeling tired, but no more than anyone else with a full-time job and two young children.
A high fever prompted her husband, Shawn, to take her to their local hospital in Brooklyn, N.Y., in September, where she was diagnosed with a virus and sent home. When the fever persisted, they went to an emergency room, where she underwent a series of tests.
Within 24 hours she was diagnosed with acute myeloid leukemia and spent the next 10 days in the intensive-care unit.
"They gave her zero probability of coming out," Shawn Austin says. "We really thought we were losing her."
His wife, a lawyer who spent much of her career as an advocate for children and families, is about to begin her third round of chemotherapy. But she is given only a slim chance of survival unless she receives a bone-marrow transplant.
"Prior to our sister's illness, we weren't informed about bone-marrow donation, about leukemia," says her sister, Elsa Jones, who lives in Rocky Hill.
That changed quickly.
When none of Jennifer Austin's family proved to be an appropriate match to donate marrow, they began a mission to encourage people to be tested and join the National bone marrow Registry in the hope of saving her or the thousands of others who are awaiting a transplant.
One of their efforts to find a match for Austin, 41, will be in Bloomfield this weekend. During a registry event this Saturday from 6:30 to 10 p.m., Zumba instructor Jeanne Warren of Bloomfield has volunteered to lead a free Zumba class at the Arthur Murray Dance Studio in the Wintonbury Mall. Participants can choose to be tested as a possible match, but it is not required to take the exercise class. All that testing requires is a cheek swab, and no surgical procedure is necessary if you are later found to be a match. The event is organized by Jones, Warren and Sistah Anyango of FLYY Fitness, who teaches at the studio.
Part of the family's goal is to increase the number of people of color on the registry. Because tissue types are inherited, a patient is most likely to find a donor with the same racial or ethnic background. Austin is African American.
African Americans and Latinos are under-represented on the registry, which has about 8 million potential donors, according to Catherine Claeys, spokeswoman for the National Marrow Donor Program. There are about 6 million Caucasians, 550,000 people of African descent and 800,000 Latinos, Claeys said.
"If she finds a donor tomorrow, we're going to continue our drive," Jones says.
Since Austin's family started their campaign, more than 5,000 people have been tested at almost 70 events, with two scheduled for this weekend in Connecticut, Shawn Austin says.
The cheek swab even can be done at home, and kits may be available Saturday.
The kind of bone-marrow transplant Austin and about 60 percent of others need requires no surgical procedure. Five days before the procedure, donors take a drug that increases the production of blood-forming cells, Claeys says. The donor then sits in a lounge chair for four to six hours as blood is extracted through an IV in one arm, blood-forming cells are removed, and the remaining blood is returned to the donor through an IV in the other arm.
When physical exams, other tests and educational sessions are included, donors can expect to spend 30 to 40 hours on the process, Claeys says.
"If you're a match for a patient, you could be their only hope for a cure," she says.
In about 20 percent of the cases, usually involving children, the patient's doctor determines that surgical extraction of bone marrow is needed, which is done under general or local anesthesia.
Another growing source of bone marrow donations is from umbilical cord blood, a process that does not affect labor or delivery, and is used in 20 percent of cases.
Shawn Austin, an executive in the accident and health division of Chartis insurance company, says the family's drive to get people on the registry reflects his wife's ideals. She is a senior vice president of community investment for the United Way of New York City and previously was appointed by Mayor Michael Bloomberg as the city's first family-services coordinator.
"Jennifer has always been about helping others," he says.
He says their children, ages 12 and 8, are doing well and the family made the most of the holidays, given the circumstances.
"She's up and down," he says of his wife. "There are good days and days when she contemplates if she's going to be around."
Jones says the response to the their efforts has been overwhelming and a source of strength.
"It's all about helping each other," Jones says. "We're created a village of so many people who want to help."

