Anguished mom waits for son’s bone marrow donor
MIAMI — Everyday, Mayra Garcia wakes up with the same thoughts. Is today going to be the day? Will she get the call telling her there’s a match for her young son? Will he finally get the bone marrow transplant to save his life? “It’s getting harder every day,” she said, fighting back tears. “He’s only a little kid. We need help.” Garcia, 31, who lives with her husband, Dany Morales, 34, said her life has been a constant waiting game since her 7-year-old son, Julian, was diagnosed at age 3 with Dyskeratosis congenita, a rare genetic disorder in which the marrow does not produce sufficient blood cells. While he’s on a medicine that has stabilized him, there are only a few more years it will work, doctors say. The only long-term treatment for him is a bone marrow transplant, which replaces the damaged cells with healthy blood stem cells from the bone marrow. Through Be the Match, a Minneapolis-based nonprofit, Garcia has held donor drives and had dozens of friends and family members tested, but none completely match Julian’s DNA profile, necessary for the transplant. Complicating matters, according to Be the Match: Garcia is from Mexico and her husband is from Nicaragua, making it harder to match Julian’s DNA profile, as there are fewer Hispanic donors. “The more ethnically diverse your background is, the more difficult it is to find a match,” said Amy Alegi, vice president of marketing and communications for Be the Match, which strives to find marrow donors for people diagnosed with blood cancers such as leukemia, lymphoma and multiple myeloma. The number of people who sign up for the registry who are Hispanic, black or from other ethnic groups are disproportionally low. In 2017, only 7 percent of the registry was made up of Hispanic donors, and only 4 percent were black. By comparison, 49 percent of the registry were non-Hispanic whites. The registry contains about 19 million donors. Alegi said the organization has been educating people through donor campaigns. “We are always trying to diversify our registry,” she said. Garcia said when Julian was born on Sept. 18, 2011, he was a happy baby. As time went on, though, she began to notice her baby looked yellow, was crying a lot and “wasn’t acting right.” She took him to several pediatricians and was told to take him out in the sun. Then she noticed a lesion on his tongue. One day, a pediatrician said she thought Julian had cancer. Frantic, Garcia took him to Baptist Hospital. He was there for four months, being treated with steroids and hormones. But he didn’t seem to be getting better. She started researching the best treatment centers for blood disorders and stumbled on Boston Children’s Hospital. She took him there when he was 3. She finally got the diagnosis, Dyskeratosis congenita, which is very rare. She started carrying swab kits in her car to collect samples. She flew to California to ask family members she never met to get tested. All the while, she has struggled to keep Julian happy and as healthy as possible. When he’s not in school, his mother keeps him close. Due to his compromised immune system, he can’t go to birthday parties, playgrounds and water parks. “I keep him in a bubble,” she said. Julian, who likes to watch YouTube videos and play with his little sister Isabella, 4, says he can’t wait to get his “match.” She’s not a match, nor are his parents. Garcia, who set up a GoFundMe account to help with medical expenses, said seeing her child in pain is the hardest thing. Some days she has to lock herself in the closet and cry. “I just want to keep my son alive,” she said. “It’s scary. Sometimes I feel it might not happen.”