Parents of boy with sickle cell form nonprofit, give back to Duke Children’s Hospital

December 13, 2017 GMT

The Mix 101.5 WRAL-FM Radiothon raises money for family support programs benefiting patients and families at Duke Children’s Hospital.

The Okafor family went through a tough time when their newborn son was diagnosed with sickle cell disease.

Kaiden Okafor’s family describes the 3-year-old as a happy boy, especially near Christmastime.

But almost immediately after he was born, his parents, Devon and Shanece, remember there were complications.

“A couple of days into it, he was having issues with jaundice,” his mother, Shanece Okafor said.

Blood tests revealed he had a form of sickle cell anemia - which came as a big surprise.

“I know my mom has the trait, but she thought it skipped me and my younger brother because both parents have to have the trait in order to have the disease,” Shanece Okafor said

Red blood cells are normally shaped like puffy red discs, but with sickle cell, they can form into a crescent shape. They’re rigid and sticky and can become trapped in blood vessels, blocking normal blood flow.

It can cause pain, tissue damage and frequent infections.

“For a good year and a half, almost 2 years, we were in the hospital very frequently,” she said.

It was a challenging time made better, they say, by the Duke pediatric staff and the nearby Ronald McDonald House.

“They do everything they can to make sure that you feel at home and they help you cope with the situation,” Devon Okafor said.

Kaiden is on a variety of supplements and medications, including penicillin, twice a day.<br /> <br /> “He’s been doing better,” Shanece Okafor said. “So we’re just really thankful.”

They’re also very thankful because Kaiden’s form of sickle cell is more manageable than many other children who deal with the disease.

They’ve started their own non-profit under Kaiden’s name as their way of giving back.

“We want to be able to partner with other nonprofits and make it happen for those children that have worse cases than him,” she said.

The MIX 101.5 Radiothon continues through Friday.