A Book Club for Kids with Sickle Cell Disease

By Ashley Winters

As is the case for institutions treating the disease, a majority of the sickle cell patients at SSM Health Cardinal Glennon Children’s Hospital are African American. The hospital recognized the need to provide patients with books featuring characters that were representative of their sickle cell patients and their experiences. So, they partnered with Eye See Me African American Bookstore in an effort to include literacy as a component of their approach to pediatric care. The Black-owned establishment specializes in children’s books that promote positive images and stories about Black culture and history and children’s books written by African American authors.

The grand opening of The Crescent Club Book Club took place on Dr. Martin Luther King Jr. Day. Developed by SSM Health Cardinal Glennon Children’s Hospital’s Shining Star School–the Costas Center and Eye See Me African American Children’s Bookstore, a library of over 270 books was presented to children and families affected by sickle cell disease.

“What better day to recognize the importance of our African American community and our togetherness and improve,” said Brenda Wilson, a school teacher at Cardinal Glennon. “We want to provide children excitement and belief in themselves just like Dr. Martin Luther King did.”

Wilson says some sickle cell patients miss school, interrupting their education. The hospital contacted Eye See Me co-founder and co-owner Pamela Blair to purchase books for outpatients and patients with sickle cell disease. She put together a list of books for infants to 12th grade. Naomi Blair, daughter of the Eye See Me owners Jeffrey and Pamela Blair, said the bookstore has mirror books and window books for children and readers of color. “When the patients read a book it will be a mirror book that reflects their culture, their history, ideals, and community,” said Naomi. According to Naomi, reading books that represent one’s culture garners the patient’s self-esteem and self-identity.

According to the Centers for Disease Control and Prevention CDC, there are approximately 100,000 individuals in the United States living with sickle cell disease (SCD) and another 2.5 million living with sickle cell trait. SCD is a hereditary red blood cell disorder that affects the way red blood cells move and carry oxygen throughout the body. Healthy red blood cells have normal hemoglobin which is a protein in red blood cells that carry oxygen. People with SCD have a special type of hemoglobin that does not carry oxygen as well compared to those who have a healthier type of protein. When sickle hemoglobin releases oxygen, it clumps together forming a stiff rod, which causes the red blood cell to become sickled, or banana-shaped. Sickled red blood cells can pile up and block blood flow keeping healthy red blood cells from carrying oxygen from getting where they need to go. Organs are not able to receive necessary oxygen, resulting in a myriad of symptoms – including anemia and severe fatigue.

Data from Sickle Cell Speaks shows people of African descent make up 90% of the population.

The Cross family knows firsthand how difficult the disease can be. Cherie Cross’ daughter, seven-year-old Makayla has SCD.  Her other daughter, six-year-old Terri Nicole has the trait. “Having the Crescent Book Club allows my daughters to escape the hassle of having sickle cell disease,” said Cross.  

Children impacted by the disease will sometimes be separated from family and friends due to extended hospital stays.

“What better way to fill that time to allow them to go inward and read stories about themselves and the community they come from,” said Jeffrey Blair. “It takes them to a new adventure. It’s a gap the bookstore is trying to fill.”

Wilson expressed partnering with the bookstore is such a gift. “Our goal is that when children come here with sickle cell disease they can leave with a book,” said Wilson. “We’ve got great books for them to choose from.” 

The program is part of SSM Health Cardinal Glennon Children’s Hospital’s ongoing commitment to serving the St. Louis region and providing holistic care for children and their families.

“For kids who have long periods in the hospital, utilizing a book can take them on adventures that a TV can’t,” said Jeffrey Blair.

For more information, visit ssmhealth.com.

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