A Central Florida couple is waiting for the perfect match to help save their 4-year-old daughter who was diagnosed with a rare form of cancer.
They have now made it their mission to spread the word about the bone marrow registry. The registry connects patients in need of a transplant the ability to access over 33 million potential donors.
Chloe Bella Carvahlo’s life is in the hands of strangers as she desperately waits for a blood stem cell transplant.
The 4-year-old may be small, but her personality lights up the hallways at Arnold Palmer Hospital in Orlando.
The shy but-sweet little girl has a very rare form of cancer, juvenile myelomonocytic leukemia, also known as JMML.
Nayara Hermes, Chloe Bella’s mom, told News 6 that she took her daughter to the doctor after she wasn’t acting like herself and noticed her stomach looked bigger than normal.
After several tests at the hospital, Hermes still remembers the first time she heard the unexpected diagnosis.
“So they did some more tests and it came back to be JMML which is a really rare type of leukemia. It’s like 1 in a million,” said Hermes. “I remember crying and having my husband come in just like, hold on, wait, let’s just wait. You know, let’s have faith. And I do have faith.”
And just six weeks later, their little girl’s life is in the hands of bone marrow donors.
Mauricio Murillo, a supervisor at a recruitment center for Be the Match, said that because Chloe Bella is Brazilian, finding a match in the U.S. is even more challenging.
Be the Match is the world’s largest donor registry and works with other registries around the world to find bone marrow transplants for those in need.
Adding donors to the registry is crucial to give every patient an equal chance at finding their match.
— Be The Match (@BeTheMatch) July 19, 2019
“If you’re Caucasian, you have about a 77 percent chance of finding a match on the registry, which is pretty good. But if you’re a minority, it’s going to shrink, go down a lot more than that. So if you’re Hispanic or Latino, where again in Bella’s case, you have about a 46 percent chance of finding a match on the registry. If you’re African American, that’s going to drop down to like 23 percent,” Murillo said.
He also said that having committed and ethnically diverse donors are a huge need, especially in Chloe Bella’s case.
Hermes said she got involved with Be the Match 10 years ago, before her children were born. Even with both parents, and her 6-year-old brother registered, little Chloe Bella is still waiting for a match. Murillo said that there is a 30 percent chance of finding a match within your family.
“It’s the unknown that is very scary, and you have to rely on someone, you have to rely on having a donor, you know, and a donor that is not going to say at the end of the day you know what, I changed my mind,” Hermes said.
“I want to see her graduating, I want to see her dancing ballet. I want to see her getting married, I want to have my family, so I need help,” Hermes pleaded.
According to Be the Match, only about one in 430 members on the registry will actually donate.
Murillo expanded more on the registry process and how easy it is for people to register.
“We’re going to mail you a cheek swab in about a week or so. You just do the cheek swab and you put that back in the mail. That will officially add you onto the registry. And from that point on, patients every day will look to see if you become a match for somebody in need,” Murillo said.
If you’d like to join their push and help save Chloe Bella’s life, text SaveBella to 61474. You can also visit their website at Join.bethematch.org/SaveBella
Chole Bella’s mom told News 6 that three potential donors have been identified, but they’re still waiting for the results.
“You’re going to save a life. You know, the first step is just like registering, being there and doing the little swab. And then, just stick with that, because you can save my daughter’s life. Someone can save her. And that’s her only chance,” Hermes added.