INDIANAPOLIS (WISH) — Treatment for sickle cell disease has been a slow-moving process. While researchers work to develop better treatment options, Riley Hospital for Children is stepping in for a little extra support by creating a sickle cell story club for kids.
Many people are familiar with the pain sickle cell disease can cause but less so with the impact it can have on academics and overall mental well-being. And for growing kids, doctors say this book program can be a major part of a foundation to a lifelong battle against the disease.
Va’Sean Cody is a typical 12-year-old boy. During his first newborn check-up, his mother, Takeysha Battle, found out he had sickle cell.
“I was scared. I started crying and everything. I was really scared.”
Children with parents who carry the sickle cell trait have a greater chance of developing the disease. Sickle cell is a mutation of blood cells and can clog blood flow, which can have an impact on organs and other parts of the body, ultimately leading to sickle cell’s most common side effect: extreme, full-body pain.
“Because sickle cell affects the red blood cells, it really does impact every part of our body. And one of the places it can affect at an early age is the brain,” said Dr. Seethal Jacob with the sickle cell program.
Battle said she didn’t know she carried the trait and neither did Va’Sean’s dad.
“When he had his first crisis, he was 10 years old. And I think he was out of school for a good two weeks,” she said. “And that was the first time he ever had to be hospitalized for sickle cell or anything.”
Va’Sean is one of the kids participating in Riley’s sickle cell story club.
Black people are just at risk for having sickle cell, and that factors into the book selection. Most of the key characters in the books are Black, too. Doctors said kids seeing representation of themselves in books makes them more willing to pick one up.
Kids in the program receive a free book on every visit. For kids who may miss a lot of school due to sickle cell, crisis literacy is important as it factors into all forms of education.
“It is my brain childm” said child pediatric psychologist Julia LaMontte. “So I’m super passionate about encouraging reading. And especially for our patients who may be at risk for learning difficulties.”
Thanks to donations, Riley has distributed more than 100 books in the last three months.
“When patients come to receive care at Riley, we’re not just treating their physical health or treating their emotional health, their academic health.”
Battle said her son has been able to keep his condition in check, and the book is an added bonus.