Meet Reign
“Your blood is like this,” says 7-year-old Reign Jefferson. She cups her fingers like capital Cs. “My blood is like this,” Reign says. Her fingers clamp down into a sickle shape. This is how Reign explains her medical condition: sickle cell anemia. One of her Nemours Children’s doctors taught her the demonstration. She shares it with children and adults alike. Following her demo, Reign further expounds that she must drink plenty of water to help her blood cells “open up.”
Reign’s mom, Elecia, recalls when her daughter was diagnosed as a baby. “I felt so sad and guilty. I thought it was all my fault,” she says. “I was scared and nervous, and Nemours Children’s has wiped away all of my fears. Without her care team, Reign would not be the energetic, dancing, cart-wheeling girl she is today.”
Elecia has good cause for concern. Sickle cell anemia symptoms can include tiredness, difficulty breathing (also known as chest syndrome), pain and swelling in the hands and feet, cold feet and pale skin. In addition, many patients experience episodes of acute pain, seizures, chronic organ failure and stroke. The average life expectancy for females with sickle cell anemia is 48, while it’s 42 years for males.
“Sickle cell doesn’t stop me from having fun,” says Reign. “At Nemours Children’s I like playing with the train, getting my face painted and eating cafeteria food. I love chips and cake pops. I also really like my doctors and want to be just like them.”
“We have appointments every three months,” says Elecia. “The doctors and nurses come in the exam room, sit down and talk with Reign so she feels comfortable and like she is part of her care. It’s clear they want patients to feel happy and healthy, not sick.”