Just three days after becoming a new mother, Rosa received the letter in the mail that would change everything.
She sat down and cried. Fear. Guilt. Tears.
Sickle cell.
Rosa had no idea she carried the sickle cell trait. She had never had a sign. People with only one sickle cell gene generally have no symptoms. But when a child inherits a sickle cell gene from both parents, he or she develops sickle cell disease.
Jamira, her beautiful new baby girl, tested positive for the blood disorder. Rosa knew nothing about the disease and felt the need to educate herself. Johns Hopkins All Children’s Hospital has helped along the way. For virtually all of her 16 years, Jamira has been treated by the sickle cell team at the hospital.
Early on, Rosa was given a sickle cell explanation that made sense: normal cells are round, sickle cells have sharp edges that get caught and bang into organs as they travel through the body. It creates havoc and can cause damage off and on throughout a person’s life. It affects about 100,000 people in the United States, most commonly African Americans, according to the Centers for Disease Control and Prevention.
Sickle Cell in the Jackson Family
Rosa knows now that there are triggers to look out for in Jamira. Things to avoid. Ways to plan. Rosa was overwhelmed at first, but she said out loud what she has been saying ever since to anyone who will listen: “There will be no negative talk in this house.”
Rosa’s older daughter, Jasmin, a teen when Jamira was born, turned out also to carry sickle cell trait. Jasmin has a daughter of her own named Antonesha, now 9, who was born with sickle cell disease.
That’s four members in the same core family connected by sickle cell. Four strong, brave, stubborn females.
“This is a family affair,” Jasmin explains. She watched her sister go through it, now her own daughter. Both are treated at Johns Hopkins All Children’s. “We all pitch in to lift each other up because one day they are going to beat this.”
“People with sickle cell disease have normal intelligence just like we see in Jamira,” Clay explains,
“however, with the sickle damage that can cause in the brain, they may have some cognitive deficits and may need some support in school. Jamira uses our tutoring services here at the hospital to help her progress in school. We are fortunate to have school teachers available to us for her to take this advantage. Many sickle cell programs do not have such a program available to them. Education is important for young kids like Jamira. People with sickle cell disease achieve all goals they have in life. There are scientists, doctors, lawyers, educators, advocates, entertainers with sickle cell disease.”