Mom tries to find bone marrow donor for her 7-year-old

HOMESTEAD, Fla. (AP) – 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 her 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 there is a doctor who has stabilized him, there are only a few more years it will work, doctors say.

The only long-term treatment is a bone marrow transplant, which replaces the damaged cells with healthy blood cells from the bone marrow.

Through the Minneapolis-based nonprofit, Be the Match, Julian's DNA profile, the necessary for the transplant.

Complicating matters, according to The Match: Garcia is from Mexico and his husband is from Nicaragua, making it harder to match Julian's DNA profile, as there are less Hispanic donors.

Amy Alegi, Vice President of Marketing and Communications for Be The Match, said: "The more ethnically diverse," 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 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 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 trained 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 in Los Angeles personal trainer, speaks to the other. He said he did not hesitate to donate his marrow.

"I believe in second chances in life," said Harvey, who later learned of the life of a man with 66-year-old man with leukemia.

Garcia said when Julian was born on Sep 18, 2011, he was a happy baby. As time went on, though, she began to look at her baby looked yellow, was crying a lot and was not acting right.

She took him to several pediatricians and was told to take him out of the sun. Then she noticed a lesion on her 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 did not seem to be getting better.

Nicklaus Children's Hospital for a second opinion. Again, they tried different medicines to treat their symptoms, which included mouth sores and bread.

"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 get tested. She considered that another baby might be a match, but because she is a carrier of this disorder, she and husband have discussed in vitro fertilization.

All the while, she has struggled to keep Julian happy and 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, playgrounds, water parks – any of the typical childhood activities.

"I keep him in a bubble," she said.

We have bad day, Julian will be up all night crying in bread. 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 loves to watch YouTube videos and play with his little sister Isabella, 4, says he can not wait to get his "match." She's not a match, nor are her 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 the child is in the hardest thing.

"Any parent would give up anything to make sure their kid is healthy," she said.

Some days in the closet and cry.

"I just want to keep my alive," she said. "It's scary, sometimes I feel it might not happen."

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Information from: The Miami Herald, http://www.herald.com