Hispanic mother desperately seeks bone marrow transplant

By KIRSTEN GRIESHABER
Associated Press Writer

February 8, 2006, 12:55 PM EST

NEW YORK -- When Janet Ovalles' 7-year-old son Jaison returns from school, the first question he asks is if she has found a bone marrow donor. Jasion doesn't exactly know what that is, but he understands that "mommy needs new cells to be healthy because her blood is sick."

Ovalles, a 29-year-old New Yorker of Dominican descent, is suffering from lymphoma, a type of blood cancer. Her doctors say her only chance for recovery is a bone marrow transplant _ the likelihood of which is determined as much by luck as by ethnicity, given that the most suitable matches are from people of the same racial or ethnic background.

But with Hispanics sharply underrepresented in the pool of registered donors, the prognosis for Ovalles, like other members of minorities with the disease, is bleak.

"I am a walking time bomb," said Ovalles, who lives in Bayridge, Queens. "If I don't find a donor, I will die."

Ovalles' fears are the same ones faced by an estimated 747,400 Americans who, according to the Leukemia and Lymphoma Society, are living with blood cancer. On average, about 20 percent of them are unable to find a suitable donor.

In the United States, the National Marrow Donor Program has a list of about 5.5 million donors. But Hispanics account for only 7 percent of the total donor pool while, according to a recent Census Bureau report, they represent more than 14 percent of the U.S. population.

Blacks are also underrepresented. Figures from the donor program show blacks account for less than 8 percent of registered donors while they represent 13 percent of the U.S. population. Asian-Americans, about 5 percent if the population, account for 6.6 percent of the pool. More than half, or 2.8 million, of all registered U.S. donors are white

Minorities often do not come forward for fear of getting caught in the legal system or suspicions over how their blood will be used, said Katharina Harf, head of DKMS, a bone marrow donor foundation that is trying to help Ovalles.

"A lot of them are scared that we do experiments or publish their data because they may live here illegally," said Harf, 28. "But we're not passing on their information. And if they participate in our drives they might be able to save Janet's life."

For Ovalles, there was no match in her family or among the 10 million registered donors worldwide.

Now, with the help of two donor drives organized by DKMS, she is reaching out to the Dominican community in the United States and the Dominican Republic, asking them to register as possible donors in hopes of finding a match soon.

"One day, I suddenly had a lump the size of a baseball on my neck," recalled Ovalles, who was diagnosed three years ago. The lump disappeared but the cancer spread. She was treated with chemotherapy and another therapy in which she was given her own bone marrow cells but she relapsed each time.

Recently, she also participated in a clinical trial at a New York hospital. that involved new drugs. The treatment suppressed the cancer, but did not heal her.

A bone marrow transplant is the best chance for recovery, said her oncologist, Dr. Michael Schuster, a professor of medicine at the Weill Medical College of Cornell University.

"Time is always of the essence," said Schuster, who is also the director of stem cell transplantation at the New York-Presbyterian Hospital. "Cancer doesn't wait, it continues to grow."

Despite her disease, Ovalles tries to maintain her daily routine. A single mom and a part-time receptionist, she tires quickly and suffers from various side-effects from her medication.

In her free time, she visits libraries, colleges and Dominican community groups asking them to participate in the upcoming Feb. 24-25 donor drives at the Fifth Avenue Presbyterian Church and the Fort Washington Church in New York.

DKMS, which stands for "Deutsche Knochenmarkspenderdatei" or "German Bone Marrow Donor Center," is the largest nonprofit donor center in the world and has more than 1.3 million registered donors, according to Harf. Two years ago, the organization opened an office in New York.

Despite all obstacles, Ovalles is hopeful that she will eventually find a donor and live to see her son grow up. "I want to be there for him," she said. "I know my miracle is out there somewhere."


On the Net:
DKMS: www.dkmsamericas.org
National Marrow Donor Program: www.marrow.org

Copyright 2006 Newsday Inc.


National Marrow Donor Program Hispanic / Latino Initiative *

Iniciativa Hispana / Latina del Programa Nacional de Donantes de Medula Ósea