Sickle Cell Disease

St. Louis Children’s Hospital

Mariah's Story

A cheerful young lady, 11-year-old Mariah loves making Tik Tok videos, dancing and singing along to her favorite songs. She loves school and her smile is contagious.

When Mariah was born, she was tested for sickle cell disease as part of routine newborn screening and her results were labeled abnormal. After almost weekly trips to the emergency room due to spiking fevers, at 4 months old she was given the official diagnosis of sickle cell disease — a genetic disease that alters the shape of the body’s red blood cells, causing them to become sticky and trapped in the body’s blood vessels.

Initially doctors labeled her type as SS, which is the most common type of the disease and is inherited from both parents. But after a series of tests done several years later, Mariah’s diagnosis changed to SB 0, which is classified as a more severe version that mimics SS but involves a different gene.

No matter the type, kids like Mariah all share similar symptoms like excessive fatigue, frequent infections and pain crises. When Mariah was around 6 months old, her spleen became enlarged, another symptom of the disease, and after several months of observation, doctors made the decision to remove it when she was almost a year old.

Through the years, Mariah has been a frequent visitor to St. Louis Children’s because of fevers, viral infections and pain. Initially her stays would be short — just a few days — but as she’s gotten older the visits have gotten longer, due to an increase in the pain and stress the disease is putting on her body. She must remember to take daily medication to increase hemoglobin production and reduce a chance for more damaging effects.

In December 2020, she came to St. Louis Children’s and not only was she admitted to the hospital, but she was sent to the pediatric intensive care unit (PICU) because her oxygen levels had dropped below a normal range. If not properly treated, Mariah could lose heart and brain function. After several days, she was released from the PICU and was able to leave the hospital once her pain has subsided.

Mariah is currently in a maintenance phase with her disease, and has managed to stay out of the hospital, thanks to education from her medical team at St. Louis Children’s. As she gets older, she is learning why her daily medication is a necessity and which activities can harm her health. Mariah is taking ownership in managing her sickle cell disease and is excited to share her experiences with the world.

How CMN Funds Help Mariah and Kids Like Her:

Mariah has attended Camp Crescent, which offers a place where children who have sickle cell disease can meet other campers, join in fun activities and feel more confident about living with sickle cell disease. Thanks to donors like Children’s Miracle Network, Mariah has been given the opportunity to meet other children who are like her, make new friends and learn she’s not alone in her fight with sickle cell disease.