The first thing you notice about Fanta Keita is her dazzling smile. And Fanta smiles a lot, whether she’s hanging out with friends, cheering on the Trotwood-Madison High School football team or getting new acrylic nails at her favorite salon.
But some days it’s harder for Fanta to smile, laugh or even get out of bed. That’s because she often experiences pain in her abdomen and back due to a condition called sickle cell disease. Sometimes she can manage with over-the-counter medication; other times, taking opioids is the only way to find relief. Fanta misses a lot of school because of these pain crises, and sometimes has to be hospitalized to get them under control.
a special bond
Living with sickle cell can be very stressful for children and their families, because the disease causes so much pain and requires daily care. When Fanta is really hurting, she becomes very quiet and withdraws from whatever is going on around her. That's when she relies most on her mom, Cheri. Cheri has been bringing her to the Sickle Cell Center at Dayton Children’s since Fanta was about three months old. Mom and daughter share a special bond that has been forged through the heartache of dealing with this disease.
Fanta has missed a lot of school due to pain episodes. Her eighth grade year was the worst for school absences, but it also taught her something about herself. “I had really good grades going into eighth grade, and I knew if I worked hard I could be valedictorian,” she says. “I was missing so much school that year that people were counting me out—they didn’t expect me to do it. So I just worked that much harder. I’d pick up on the new material I’d missed by studying for hours at a time at night and on weekends.”
A week before graduation, Fanta was thrilled to learn she had been named valedictorian. She decided to keep it a secret for a few days as she worked on the speech she would need to make at graduation. When the speech was ready, she sat down with Cheri and shared her surprise. “My mom had been stressed out that week, but once I told her about valedictorian, she could do nothing but cry out of joy,” Fanta says. “Seeing her so emotional from my news made me feel overjoyed. It made the achievement ten times better.”
a drive to succeed
Now a junior at Trotwood-Madison High School, Fanta takes honors classes, loves reading and writing, and is a member of the National Honors Society. Close friends know what she has to deal with on a day to day basis, but some people—even teachers—just don’t get it. “I had a gym teacher who wanted to flunk me because I couldn’t do some of the activities in class,” Fanta says. I’m like, really? Are you kidding? But he just didn’t understand.”
The one place Fanta and Cheri can always count on finding understanding and support is Dayton Children’s. “The nurses in the Sickle Cell Center are amazing, especially Teresa Berter,” Cheri says. “She is always helping us behind the scenes. If I’m having trouble with my health insurance, I call Teresa. If I need my Family and Medical Leave Act papers renewed for work, I call Teresa. She even came to Fanta’s school for a face to face with the gym teacher. I can’t even imagine Teresa’s workload, but she never misses a beat.”
Thankfulness — for Dayton Children’s, for God’s care, for supportive family members and each other—is a common theme in the Keita household. Cheri says she’s made it a point to instill that quality in her children, and remind them that they have everything they need to overcome whatever lies ahead. Fanta has taken those lessons to heart. “When friends or teachers find out I have sickle cell, they are so surprised, because I am a really positive person,” she says. “I am just not someone who is going to be sad all the time and feel sorry for myself about the circumstances that have been handed to me. My mom says sickle cell doesn’t own me, and she’s right. I’m just going to keep on living my life.”
what is sickle cell disease?
- An incurable disease that affects hemoglobin, a protein in the red blood cells.
- Causes red blood cells to change from disc shaped to crescent shaped. These cells may stick to vessel walls or burst apart, creating blockages and preventing oxygen from reaching nearby tissues.
- Causes organ damage and attacks of sudden, severe pain, called pain crises. These can come without warning, although triggers may include infection, physical exertion and stress.
you can help
Fanta's mom works hard to make ends meet, but sometimes she's had to make tough choices - pay the bills, or pay for medicine? Fortunately, donations to Dayton Children's made it possible for Fanta to get her medications and for her mom to sleep better, knowing they could pay their bills.