Dealing with sickle cell disease together

Ky’lanii Gambrell is a typical spunky 3-year-old girl. She enjoys playing with her dolls, running around the park, and spending time with her mother and grandmother. As healthy as she looks, it is hard to imagine that less than two months ago her family sat at her bedside while she fought for her life in the Prisma Health Children’s Hospital–Upstate Pediatric Intensive Care Unit (PICU).

Ky’lanii has sickle cell disease (SCD), an inherited disorder of the red blood cells that results in shape change and blockage of the critical flow of blood and oxygen when the cells become stressed by infection, temperature change and other factors. Children with SCD are at increased risk of severe infection from certain viruses and bacteria that are much more easily tolerated by children without the disorder.

Ky’lanii developed a viral infection that resulted in a shutdown of the production of her red blood cells in the bone marrow. She was active and playful one day and then a week later her hemoglobin was so low that her heart could not keep up with the demands of her body. She experienced a cardiac arrest and required support with blood transfusions and a breathing machine while in the PICU. After spending two weeks in the hospital, she miraculously made a full recovery.

The Gambrell family has much to be thankful for this holiday season. They celebrated with other families dealing with SCD at the first annual Camp Crescent Family Day, an event organized by the Prisma Health Comprehensive Sickle Cell Disease program in conjunction with the Bradshaw Institute for Community Child Health and Advocacy and generously funded by Clement’s Kindness Fund for the Children. It was a chance for individuals with SCD of all ages and their families to come together for food and fellowship. The focus of the inaugural camp day was to develop a “family” within the SCD community, made up of patients, advocates and health care providers who are excited to bring a voice to a chronic illness. Camp Crescent Family Day not only gave the SCD community a chance to celebrate the individual victories like that of Ky’lanii over her recent infection, but also honored the ongoing fight of so many others in our community who are dealing with SCD.

This blog was written by Alan Anderson, MD. For more information about Prisma Health Children’s Hospital–Upstate, click here.

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