On a baseball field in Grapevine, 14-year-old Reagan Roque doesn’t appear any different from any of the other teens running the bases. But on the inside, there’s a disease he fights to overcome every day.
"I can have pain anytime of the day and I can't concentrate,” Roque said.
Roque was born with sickle cell disease, an inherited blood disorder that means his blood cells are deformed, often crescent-shaped instead of round.
"It comes with organ damage and tissue damage and possibly strokes,” he said.
"Sickle cell's really unpredictable, so you never know when they're going to have a flare-up or pain crisis. So they miss out on stuff,” Reagan’s mom Jaimee Roque said.
Throughout his life, Reagan has had more than his fair share of hospital stays.
Still, Jaimee said he pushes through.
The latest news from around North Texas.
“His dad and I made a really intentional decision when he was diagnosed that we weren’t going to let it sideline him,” she said.
In Reagan’s case, there’s no treatment or cure available. It’s the same for his little brother.
But for some other patients, a bone marrow transplant can mean the end of a disease that not only wreaks havoc on the body but can also shorten a life span.
That’s why on World Sickle Cell Day, Reagan partnered with Carter Bloodcare and Be the Match for donor drives during his baseball tournament.
“I asked people to come out and swab their cheeks to see if they have the same bone marrow as somebody else with sickle cell,” Reagan said.
He also proudly plastered a disease most don’t usually see on his chest with a special jersey designed for his entire team.
“It doesn’t define him. But it’s part of who he is, and I’m just proud that he’s happy to talk to anybody about sickle cell, tell them what it is, explain it,” Jaimee said.
Reagan said he hopes that by spreading awareness, there can be an increase in funding to develop more treatments and a cure for kids like him.
Sickle cell disease affects 100,000 Americans. It’s the most common inherited blood disease.
The majority of those people are Black. Yet Be the Match says that’s the most difficult ethnicity group to match with a registered bone marrow donor.
To register, visit bethematch.org or text WS4SCD to 61474.