Sickle Cell Disease: Joshua's and Jaimier's Story
It is high noon, and the hospital’s main lobby is pulsing with energy…
Patients and families are checking in for appointments, doctors and nurses stride by with purposeful steps, and the lunchtime crowd begins to flow into the cafeteria for the prized Thursday Southwest Chicken Salad special.
Amid all the activity, the natural light from the lobby’s spacious atrium beams down on a small table near the sitting area.
The sign on the table reads, Be The Match.
September is Sickle Cell Awareness Month and, on this late September day, a few courageous hearts are trying to change the odds for some kids who are struggling. Johns Hopkins All Children’s volunteers have teamed up with Be The Match and STAR (Sickle Cell Transplant Advocacy & Research Alliance) to recruit donors for the national marrow donor registry. They are hoping to have a good day.
“Oh, hey! Have you been tested yet?” says Keyona, the mother of teenage boys, as she works the room. She lays a hand on a stranger’s shoulder and tries to make a fast friend.
“You have time, I promise,” she says. “It’s just a quick cheek swab!”
Keyona is way past worrying about making people feel a little uncomfortable with her level of enthusiasm. She has two very personal reasons for that.
Eighteen-year-old Joshua and 14-year-old Jaimier are half-siblings, both with severe sickle cell disease. Both have suffered multiple strokes, pain episodes, blood transfusions and several lengthy hospital stays. Many times over the years, both of the boys have needed to be hospitalized at the same time.
“I would try to get them put in one room … because I’m only one mama, you know?”
Joshua has endured the most. His last stroke, at the age of 8, left him unable to walk or express himself well with words. But he understands things. He understands why he is here. He is looking for a match.
A blood stem cell transplant is the only known cure for sickle cell disease. Sickle cell affects one in 365 African Americans. Of the 20 million potential donors on the registry, only 4 percent are black or African American. As a result, black patients only have a 23% chance of finding a blood stem cell match.
Blood & Marrow Transplant Specialist Deepak Chellapandian, M.D., treats sickle cell patients in need of transplants. He says more awareness is key – helping people to understand what being a donor can actually mean for a child.
“It means freedom from a chronic illness forever,” Chellapandian says. “It does change the life of a child. They no longer have to worry about any pain crises episodes, narcotic usage, hospitalizations or blood transfusions. They can participate in activities and lead a normal life just like any normal kid.”
For Jaimier, a stem cell transplant could mean a chance to fulfill his dreams of excelling on the football field. As for Joshua, a transplant can’t reverse the damage the strokes have caused, but it could keep his condition from becoming worse.
“Let’s just say I have no intention of losing my baby,” says Keyona.
Keyona dreams of finding a donor match for both of her boys, but she’s one of those people who doesn’t stop at dreaming. She is actively working to manifest a second chance for her children. It’s in the photos she shows off in which she’s recruited the neighbors, the boys’ teachers, and even their bus attendant to wear the sickle cell colors and spread the word. It is in her breathless enthusiasm for educating people about the disease. And it’s in her clear and transparent love for her boys – and her community.
“We need folks to support, support, support,” Keyona says. “If you care about children, if you care about your culture, if you have a heart, just take the time to be tested. This could cure so many kids!”
Perhaps the boys are accustomed to their mother’s passion for the cause. On this day, Jaimier moves lightly around the buzz of activity, seemingly without a care.
But Joshua – Joshua is observing quietly from his wheelchair, his bright eyes fixed on each potential new donor who steps up to the table and says yes. He watches as a young woman removes a small test stick from its envelope, swabs the inside of her cheek, and then slips it delicately back into the packet. You can almost read Joshua’s thoughts.