Hispanic mom seeks marrow for son, 7
Florida woman plays waiting game.
Every day, HOMESTEAD, FLA. —
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 in Homestead with her husband Dany Morales, 34, said her life has been a constant waiting game since her 7-year-old son Julian was diagnosed with Dyskeratosis Congenita, a rare genetic disorder in which the marrow does not produce sufficient blood cells, when he was 3.
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 the Minneapolisbased nonprofit, Be the Match, 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 comprised 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.
Brandyn Harvey, a former NFL player who played for the Atlanta Falcons, Arizona Cardinals and St. Louis Rams, said he is a true believer in what Be the Match does.
He was in college at Villanova University in Pensylvania when he first learned about becoming a donor through an outreach campaign around 2005. In 2016, he got a call saying he was a perfect match to save someone’s life.
“I believe in second chances in life,” said Harvey.
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 said she then took him to what is now Nicklaus Children’s Hospital for a second opinion. Again, they tried different medicines to treat his symptoms, which included mouth sores and pain.
Along the way, doctors told her it could be a blood disorder. She then started researching the best treatment centers for blood disorders and stumbled on Boston Children’s Hospital. She took him there when he 3. She finally got the diagnosis, Dyskeratosis Congenita, which is very rare.
The doctors told her it should be easy to get a bone marrow donor.
She started carrying swab kits in her car, needed to collect a sample. She flew to California to ask family members she never met to get tested. She considered having another baby that possibly could be a match, but because she is a carrier of this disorder, she and husband have talked about in vitro fertilization.