Every day, 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.
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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 Minneapolis-based 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.
Harvey, now a Los Angeles personal trainer, speaks about his experience to help recruit other black donors. He said he didn’t hesitate to donate his marrow.
“I believe in second chances in life,” said Harvey, who later learned his donation saved the life of a 66-year-old man with leukemia.
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.
“It was trial and error,” she said.
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.
All the while, she has struggled to keep Julian happy and as healthy as possible. He is now a first grader in a small private school. He started late last year after getting permission from the doctor.
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, water parks — any of the typical childhood activities.
“I keep him in a bubble,” she said.
On a bad day, Julian will be up all night crying in pain. Sometimes, he will stop eating because his swollen tongue is blistered. Other times he stays on the couch all day because it’s too painful to walk.
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.
“I’ll get to go to water parks,” he said. “When I feel better I can do anything.”
Garcia, who set up a GoFundMe account to help with medical expenses, said seeing her child in pain is the hardest thing.
“Any parent would give up anything to make sure their kid is healthy,” she said.
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.”
How to help
If you’d like to join the Be The Match Registry to help Julian or other patients like him, please visit Join.BeTheMatch.org/SaveJulian.
Considering becoming a donor?
Here are some facts from Be the Match:
▪ About 70 percent of people who need a bone marrow transplant do not have a match within their family.
▪ Between bone marrow and cord blood transplants, Be the Match has facilitated 86,000 transplants since 1987.
▪ There are more than 19 million people in the registry in the United States.
▪ The recommended age limit to donate is 18-44.
▪ The likelihood of finding a match on the registry is 23 to 77 percent, depending on one’s ethnic background.
▪ There are two types of donations.. Most of the time a patient’s doctor requests a PBSC donation, a non-surgical, outpatient procedure similar to donating platelets or plasma. Some patients need marrow, which requires a surgical procedure. General or regional anesthesia is always used.
▪ To join the registry, request a kit from BetheMatch.org and swab your cheeks to get a DNA sample.
▪ Matching tissue types is far more complex than matching blood types, which is why the more diverse the registry, the better.