More than six years after her parents weathered strong criticism and beat daunting odds to provide her with a life-saving bone marrow transplant, Anissa Ayala-Espinosa is working to keep others from facing the same ordeal.
Ayala-Espinosa, now 25, was found to have chronic myelogenous leukemia in 1988. Her parents, unable to find a donor with matching marrow, decided to conceive another child, based on a 1 in 4 chance that the baby would be a match.
Amid the heated national debate that followed the family’s decision, Marissa Eve Ayala was born April 3, 1990. Fourteen months later, Marissa Eve successfully gave a matching sample of bone marrow and saved her older sister’s life.
Since then, Ayala-Espinosa has fully recovered and currently works to build up the number of potential donors.
“I wanted to give something back,” Ayala-Espinosa said Tuesday. “I know what it’s like to be on the other side.”
Two years ago, the American Red Cross, through the National Marrow Donor Program, launched a program to get more Latinos to register as bone marrow donors. Ayala-Espinosa, who had been volunteering at the Red Cross since her recovery, got a full-time job with the program, called Hispanics Giving Hope.
When Ayala-Espinosa needed a transplant, there were only 17,000 marrow donors registered nationally. Now, sparked in part by high-profile cases like hers, 2.7 million people have signed up.
“Her case drew such tremendous national attention,” said John Echeveste, spokesman for the National Marrow Donor Program, “that it couldn’t help but make [people] look at the need to register in greater numbers.”
But as program officials pointed out at a news conference Tuesday, the numbers are still too low, particularly among minority groups. Only about 189,000 Latinos, for example, have registered as donors nationwide--a pool providing only about 30% of Latinos with potential donors.
Because marrow type is linked to ethnicity, a person is most likely to find a matching donor from someone with the same ethnic heritage.
Siblings share a 25% chance of having the same marrow type, and Anissa’s brother was tested, but he was not a match.
The Ayalas faced another obstacle in that Anissa’s father needed to reverse a 17-year-old vasectomy in order to have just a 10% chance of reproducing.
Ayala-Espinosa said she was inspired by a dying man whose leukemia had progressed beyond the point where he could recover with a transplant--a man who nevertheless stood up at a bone marrow drive and vigorously campaigned to find her a donor.
“Just to hear him talk like that,” she said, “I thought if I make it through this disease and I get a chance, I want to be a role model like he was, just so I can make a difference.”
“It was so sad because you know there was somebody out there that could have saved his life.”
Ayala-Espinosa hopes this year to establish an organization that will defray the cost of the marrow drives for families.
The cost to have a person’s marrow tested is about $45. Often, families will sponsor a drive in the name of a relative with leukemia. But it is unlikely that a donor for that person would be discovered at that particular drive.
“When someone does this for his son, daughter, wife or husband,” said Dorris Fannin, a recruiter at the American Red Cross, “that person brings attention to the cause and we get more people on the register, which enables us to help other individuals. Theoretically, you are doing it for the greater cause.”
Jennifer Jimenez learned in January that her 2-year-old daughter, Annaise, had leukemia. Annaise faces a slimmer chance of finding a donor because she is part Latino and part Pacific Islander.
But plans to start a bone marrow drive for Annaise have given Jimenez new hope.
“It’s better now because we’re in the process of trying to help her,” she said. “We’re not in the stage where we’re depressed and everything is sad and hopeless.”
Ayala-Espinosa wants to help the people who want a marrow drive for a loved one, but who don’t have the money and the media clout to make it happen.
She is thankful for the attention the media gave to her own fight with leukemia, and even for the criticism given by some.
“We can look back now and see that the criticism was truly a blessing in disguise,” Ayala said. “Because without that, the media would not have paid attention. It would have been just a nice family story.”
Now, Ayala-Espinosa is married and lives in Hacienda Heights. Her sister is a healthy first-grader. But the experience was rough on her family.
“No one was walking in their shoes,” she said of those who criticized her family based on ethical arguments. “It took me about two years to feel like me again. But when you have a disease like this, you learn to appreciate what life is about.”