High Point, North Carolina
When Monica first got involved with Piedmont Health Services and Sickle Cell Agency while attending UNCG, she had no idea the role the group would come to play in her life.
Monica interned with PHSSCA in the HIV/AIDS program doing community outreach. After graduation, she married her husband, Channing, and accepted a position as a case manager in the group’s sickle cell program.
Her position allowed her to help local patients and families navigate the disease and the complications that so often go with it. As she worked to educate and help other parents in High Point, she was also educating herself.
“I think that God was preparing me for my children,” Monica said.
A few years after taking the job at PHSSCA, Monica gave birth to her son, CJ. Two weeks after he was born, CJ was diagnosed with sickle cell disease.
When their daughter, Jayla, was born a few years later, tests confirmed she had sickle cell disease as well.
Monica’s time at PHSSCA helped her cope with her children’s diagnoses and equipped her to care for them as they too navigated the disease.
CJ had his first pain episode at age 7. His hemoglobin dropped and doctors gave him a blood transfusion. The transfusion of non-sickled blood quickly improved his health and he was able to get out of the hospital soon after.
“But without that blood, who knows what could have happened,” Monica said.
CJ has received several more blood transfusions over the years to fight the effects of his sickle cell. Now 15 years old, Monica said her son has worked hard to learn more about his disease so he can manage it better.
When she was younger, Jayla was in and out of the hospital too. In 2012, her hemoglobin kept dropping. Blood transfusions raised her levels, but each time, they dropped back down after a few weeks.
Jayla’s doctors eventually realized her spleen was filling up with sickled red cells and couldn’t process them out fast enough, a condition known as splenic sequestration. They were forced to remove her enlarged spleen – a procedure that required her to receive a third blood transfusion.
“It means a lot when they have to get the blood, and the blood is available when they need it,” Monica said. “Because if nobody gave, so many people could possibly die from not having that blood. And families like mine, we’re very appreciative of those who give to help save lives. It’s a plus to know that the blood comes from the community, and it stays in the community.”
Monica said that since her surgery, Jayla, now 11, has been doing extremely well. CJ hasn’t been hospitalized for about five years either.
Both children thrive at PHSSCA’s Camp Carefree, an annual summer camp for children with sickle cell. Now the organization’s Sickle Cell Program Director, Monica said her kids are able to meet other local children who are just like them.
“They all have sickle cell, so they don’t have to explain why they’re tired, or why they have to drink a lot,” she said. “At camp, it’s just a week where they can be normal kids and do what normal kids do.”
