Throughout her lifelong journey with sickle cell disease, creating her own artwork has helped eight-year-old Mya cope.
“Drawing is one of my favorite things,” the eight-year-old said. “When I’m in the hospital, I love playing the drawing game on Skylight TV.”
Throughout her childhood, Mya has been in and out of the hospital to manage pain crises, which result from a sickled blood cell clogging a vessel and cutting off blood flow. As she gets older, her pain crises become less and less frequent.
Mya also regularly attends the Sickle Cell Disease Program clinic, where she learned about a T-shirt design contest in which one patient’s design is chosen for a T-shirt sold in the hospital’s gift shop.
“I knew I wanted to be creative and try it just for fun,” Mya said.
She drew sickled blood cells in the shape of a heart with a message: “If you have sickle cell you should be proud of yourself. When you have sickle cell times can be hard. You should believe in yourself.”
Mya’s mom, Marie, said she was “shocked” to hear Mya’s profound thoughts.
“I asked her what she wanted her T-shirt to say, and she told me exactly what she wrote. I was impressed; this is what runs through her head?” she said. “I’m just amazed that at eight years old, she understands her illness, can translate it on paper and hopefully better people with her knowledge.”
Marie credits Mya’s sickle cell team with providing a thorough education for their whole family that empowers them to be active participants in Mya’s care.
“During one stay, they used beads to demonstrate how blood runs through her body. When they demonstrated it that way, she understood it really well. Now every time she has a hospital stay, there’s a lot of education and she’ll speak up for herself.”
Even though the family lives over an hour and a half away from the hospital, they choose to travel to Lurie Children’s because of the sickle cell team’s expertise and thorough attention, Marie said.
Now, Mya’s design is proudly worn by the team who has cared for her all her life, with a message she hopes will help others in her shoes.
“After all my experiences at the hospital, I learned about sickle cell, and I got to understand it now that I’m about to turn 9,” she said. “I thought that maybe if I wrote that sometimes times can be hard, it would make people feel happy.”
The Sickle Cell Disease Program is a nationally recognized center of excellence that provides comprehensive sickle cell disease care to manage the disease and prevent its complications. Our program includes:
We work to improve the health and well-being of patients affected by sickle cell disease within a kid-friendly, family-focused environment. Our specialists are trained to treat children with sickle cell disease, meet their specific needs and counsel all family members on preventive treatment measures and serious complications.