Elechi has sickle cell disease, but that hasn't slowed her down.
“She’s a fireball,” her mom, Pamela, said. “Elechi has always understood that sickle cell is a part of her life, but it does not define her. She’s always been active – she’s got her black belt, she dances, she loves to play soccer. She’s an active kid. There’s nothing about Elechi that you look at and think, oh this poor sick kid.”
Elechi is determined to live her life to the fullest – and because of the care she receives from St. Jude Children’s Research Hospital, she’s succeeding.
This summer, her family spent part of their vacation across the ocean on the African continent. First they spent two weeks in Nigeria, where Elechi’s parents, Pamela and Chikezie, are from, then they flew to Tanzania for a week.
“In Nigeria, we spent time at a mission complex with a school, a farm and a hospital,” Pamela said. “My husband set up a workshop in service for teachers and the kids and I organized a health fair with the hospital staff.”
Elechi and her older brother, Chinua, assisted at the health fair, helping to serve some 300 people from the region. Elechi helped measure body mass indexes, taught a Bible class, saw piglets born on the farm and played with relatives she hadn’t seen since she was 8 years old. The kids’ grandfather runs a boarding school in Nigeria, so they spent time with students their age and learned to play Nigerian Uno and Sorry.
“Elechi and Chinua realized that kids, no matter where they are from, are not so different from each other,” Pamela said.
But there were some scary times, too, while overseas. Twice Elechi got sick and needed to be hospitalized – once in Nigeria and once in France. "It can be scary to travel far from St. Jude," said Pamela, "but the experiences Elechi received this summer can make the unknown worth it."
Elechi has been a St. Jude patient since she was 6 weeks old, when tests revealed she suffered from sickle cell disease. “We were the first people in our family to have a child with sickle cell disease,” said Pamela. “When Chinua was born, he was healthy.”
Individuals with sickle cell disease have red blood cells that may be shaped like crescents instead of discs. Instead of moving smoothly through the circulatory system, the sickle-shaped cells clog blood vessels, triggering episodes of extreme pain and causing other dangerous complications that range from organ damage to stroke to pneumonia.
“We were so overwhelmed when we first learned the news,” Pamela said. “But we felt such peace when we arrived at St. Jude. We felt like we had someone walking alongside us when we met Elechi’s doctor. He’s full of knowledge and so patient and calm. Sickle cell is a very painful, damaging disease. We know we can’t fix it, but we know St. Jude is here with us.”
Elechi’s treatment, which has been difficult, has included daily penicillin, which she took until she was 5 years old, and a medication called hydroxyurea. As she’s gotten older, Elechi has begun to experience more difficulties. Due to complications from sickle cell disease, she does not have a spleen, so she’s more susceptible to infection. She experiences pain crises and has been hospitalized often.
The key to Elechi’s long-term health will be diligence, medication and open communication with her medical team. At 14 years old, she’s become a partner in her own health care.
Now back in the States, Elechi looks forward to her appointments at St. Jude. They’re part of the fabric of her life. “Elechi doesn’t associate any sort of pain with St. Jude,” said Pamela. “She loves it here. This is her hospital.”
St. Jude shares the breakthroughs it makes, and every child saved at St. Jude means doctors and scientists worldwide can use that knowledge to save thousands more children.
Bridging the gap between treatment and research, St. Jude scientists are conducting a study to help uncover insights into the long-term effects of sickle cell disease, including sickle cell anemia and other disorders. In addition, St. Jude will sequence the genomes of 1,000 children with sickle cell disease to understand why some patients experience more severe symptoms.
Elechi has decided she wants to be an oncology hematologist when she grows up. “I want to work at St. Jude,” Elechi said. “If there’s not a cure yet for sickle cell disease, then that must be why I have it.”
This determination, her mother said, is what she loves most about her daughter. “Sickle cell is a painful experience,” Pamela said. “But it does not define Elechi.”
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