When Jasmine DeBerry was eight years old, Jacquieea Brown moved to her Charlotte, North Carolina neighborhood. The girls quickly forged a friendship that survived elementary school adventures, the awkward days of middle school, as well as those exciting first years of high school. Sadly, their days of carefree fun and all-girls outings were eventually replaced by hospital stays. Jasmine’s friend had been living with sickle cell disease and at age sixteen, the disorder had taken a turn for the worst.
Jacquieea, like many, was in dire need of a bone marrow transplant that could have cured her of the disease and saved her life. Unfortunately, there were no full match donors available at the time. In a final attempt to combat the disease, doctors performed a transplant using bone marrow from Jacquieaa’s brother, who was only a partial match. Their attempts were unsuccessful, and the teen later succumbed to the disease.
“She was very ill and there was nothing I could do about that,” Jasmine, now 21, recalled. “I was too young to get into the registry and I felt so helpless.”
After graduating high school, Jasmine remembered Jacquieea and how powerless she felt as she witnessed her friend lose the fight of her life.
“When I turned 18, I got into the registry and she was the reason for that.”
Five years have passed since Jacquieea’s death, and sadly, there are still many who are in desperate need of bone marrow donors. Unlike other transplants, finding a matching bone marrow donor relies heavily upon race and ethnicity.
“It is the most important thing, really and truly,” said Be The Match Representative Nadya Dutchin. “We tend to match people with the same ancestry, and African American people have the least likely chances of finding an actual available bone marrow donor on the registry.”
“We need more African-Americans to take the bull by the horn and join the registry and be committed when we call them to donate,” she explained.
Of course, joining the registry sounds like a dramatic process, but surprisingly, it’s just as painless as it is simple.
“Joining the registry was really easy. You just go to BeTheMatch.org and go to the tab that says register,” said Jasmine.
After submitting some basic information, you’ll receive a kit in the mail. From there, you just swab your cheek with the tools provided in the kit and mail it back. Your DNA will then be added to the registry and in the event that you’re matched with a patient, you’ll move on to the next steps, which include a full physical, further testing to ensure that you’re an exact match and 5 rounds of steroid injections that beef up your blood cell count.
Just two years after joining the registry, Jasmine learned that she was a match for a 9-year-old girl suffering from sickle cell, to whom she was able to successfully donate bone marrow. Though she admits that the actual transplant, which she compared to a 4-hour blood transfusion, left her tired and with cold and flu-like symptoms, the college athlete explained that it’s nothing in comparison to what she was able to do for the patient.
“It’s totally worth it because you’re saving a life. You may feel bad for a few days, but you’re giving this person a second chance,” she shared.
And she’s right. Bone marrow donations are literally an antidote for sickle cell disease.
“For sickle cell patients, bone marrow transplants cure it,” said Nadya. “With a bone marrow transplant, we basically kill off the bone marrow in the patient and replace it with healthy bone marrow so that they can get those really good and healthy cells in the right proportion in their bodies. It’s basically an immune system transplant.”
3-year-old Judah Wilks, who is among the many patients awaiting a match, was diagnosed with the debilitating disease three weeks after he and his brother David went home for the first time with their parents, Bryce and Maryl Wilks. The tots were adopted from the Democratic Republic of the Congo. Months later, he suffered his first stroke.
“He woke up one morning and he couldn’t use his right arm very well. He was having trouble with coordination,” Bryce recalled. “Having such a big stroke at such a young age was very concerning for the future.”
Although the “outgoing” toddler is being treated for the disease, there’s only so much doctors can do.
“We know that over time, his organs are being damaged by the sickled blood no matter how good of care we take of him,” said Bryce.
While there’s no real way to predict when a donor will come through for Judah, his chances are increased each time someone joins the registry.
Be The Match is welcoming of all potential donors who are between ages 18 and 44, but they warn that one should be fully committed to seeing the process to completion when they decide to sign up. Currently, only 50% of registered donors actually complete the transplant process when they’re called.
“We really need to focus on commitment aspect. We really need people to be prepared to donate when we call them,” explained Nadya. “Generally, when it gets to a point where a person needs a bone marrow transplant, their only options are to hopefully go into remission, suffer from their condition or pass away from it. It really is a life or death situation at that point when a patient needs you.”
To learn more about how you can make a difference, head over to Be The Match.