Karin Willis’ sons, Elijah and Jaden, are inseparable. Just two years apart in age, the boys enjoy many of the same things – playing sports and video games, swimming at the local water parks or the beach.
And they have something else in common. They were both diagnosed shortly after birth with sickle cell disease, a group of inherited red blood cell disorders.
Karin said it has been a challenge managing their treatments and holding a job, particularly at times when Jaden was in and out of the hospital. Karin said her mom, who passed away four years ago, was a huge help.
“She was a big support for us,” Karin said. “If I needed to go to work just to keep my job or for the money to pay my bills, she would switch out with me at the hospital to stay with them.”
She said she closely follows developments in treatments for sickle cell anemia. For her boys, it’s mostly been medication – penicillin for the first nine or ten years, hydroxyurea and Oxbryta in recent years. A bone marrow transplant is not an option as it requires the donor to be a sibling who doesn’t have the disease.
The boys’ doctors at Pediatric Hematology/Oncology Department of the Prisma Health BI-LO Charities Children’s Cancer Center connected Karin with Clement’s Kindness.
“They have been instrumental in helping – both financially and by organizing group outings and events. There are the annual trips to Carowinds and Camp Courage, and the baseball games,” Karin said. “And if they want to play sports but can’t afford the equipment or fees, Clement’s Kindness will help out.”
Both boys are managing their condition. But that’s not to say it hasn’t been hard. Hard for the boys, now 14 and 12, and hard on Karin, who is raising them as a single parent.
