Bone marrow donor, recipient share their story to raise awareness among Hispanics, Latinos

Minority patients less likely to find donor match

ORLANDO, Fla. – For patients waiting to receive a transplant, time is something many of them don’t have.

“When I first found out that news I was like, ‘This man is really gonna save my life,’” Sean Carmona said. “And he really did. It was -- it was amazing to know that I had a match and he was willing to help me out.”

The 23-year-old was diagnosed with leukemia at 21. Carmona, a native of South Florida, said once doctors diagnosed him, they soon knew he would need a bone marrow transplant.

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“I had over 200,000 white blood cell count--which is very above the limit of 10,000,” Carmona said. “Getting a transplant, in the beginning, they knew immediately, since I had a mutation. The mutation that I had made the leukemia grow back faster and stronger and so they already knew that I needed a stem cell transplant.”

But when it comes to minority groups stepping up to the plate to become potential donors, there’s a big gap, according to Be the Match Foundation.

“Right now we’re seeing a huge disparity in the chances of our ethnically diverse patients finding a donor match,” Alex Mensing, director of benefactor engagement and marketing, said. “The HLA matching has a lot to do with genetics and your ethnic background but about 70% of the time people are not gonna have a match in their family.”

According to Mensing, African-American patients have the lowest percentage of donors at only 23%, and Hispanics and Latinos have about a 46% chance of finding a match.

When Carmona’s care team found a match in 2019, he said he was overwhelmed with excitement.

“When you first hear about that, you know, they tell you about the risks that, you know, sometimes you might not even be able to find a match,” Carmona said. “Jonathan came along, and he said, ‘When and where?’ and he did such a selfless act.”

Jonathan Rivera, a University of Central Florida student, signed up for Be the Match Foundation in 2017. Two years later, the organization contacted him.

“When I got that phone call I was actually really excited. Words really can’t describe how grateful I am to be in this position and to help someone in their lives,” Rivera said.

Be the Match prepared everything for Rivera, who was 23 at the time, and flew him out from Orlando to Washington, D.C. where the procedure was done.

“The procedure was quick and easy. They pretty much just sat me down, took some blood from my arm. From what I experienced, it was pretty painless,” Rivera recalled, adding, “I knew as soon as I gave that donation away, I was like, I can’t wait to meet him.”

That meeting happened a year later over the summer during one weekend day in September.

“As soon as I saw him I was like, moving quickly, I had to give him a big hug. It just meant a lot to actually meet him in person,” Rivera said.

For Carmona, it was a moment he had been anticipating for a long time.

“The days leading up to it I was like: ‘What am I gonna say to him?’ This man saved my life. What words can I put together to describe how thankful I am?” Carmona said. “I was super nervous, and my heart was racing but as soon as we met each other it was like we kinda already knew each other.”

For Rivera, who is of Puerto Rican heritage, it’s an opportunity to raise awareness among the Latino community and provide better insight about stem cell donation.

“Be the Match is very helpful from what they do, and they make everything super easy. Everything is paid for by them,” he said. “Give someone out there a chance to actually have that opportunity to get those stem cells they need to help them survive. Anyone else who is listening and is questioning whether or not they wanna help someone I can’t stress enough how important it is.”

Be the Match Foundation covers all hotel and travel expenses for the donor with help from fundraising events and community donations.

To find out more about the organization, visit: BeTheMatch.org.

On Saturday, there will be a virtual gala that anyone can watch here. The event will do a showing of the moment Carmona and Rivera met for the first time.

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