Akilah has her hands full at home while her husband is on the road. But she still finds time to dig up more research after a busy day of taking care of her twins.

“I literally will research until 3 a.m. I’m obsessed with helping my daughter,” she said. “Any resource that we have found, anything that we know of, we want to spread that.”

Through their research, Akilah and Tevin can clearly see that the odds are stacked up against Black children. According to the Centers for Disease Control and Prevention, about 1 in 13 Black babies in the U.S. are born with sickle cell trait. There are also more than 100,000 people in the U.S. living with the trait, the CDC add.

“When you’re discussing Black healthcare, regardless you always have to advocate for yourself and your rights,” Akilah said. “it’s important to just know what that means and talk to your doctor about it, because even if you and your partner have sickle cell trait, there are alternatives. But you need to discuss that with your doctor and don’t be scared.”

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