Amari’s Pain Crises

Amari Robinson

“Sickle cell disease has been the cause of her reoccurring fevers and infections”

Amari’s mom, dad, and brother are all carriers for sickle cell disease. At her first checkup appointment, 1-week-old Amari was unsurprisingly diagnosed by her pediatrician with sickle cell and sent to a hematologist as well as an oncologist. Sickle cell is an inherited form of anemia in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout the body. Normally, red blood cells are flexible and round, moving easily through blood vessels. In sickle cell, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body. Complications include the possibility of stroke, organ damage, blindness, acute chest syndrome, and skin ulcers.

The slow flow of oxygen to Amari’s organs and tissues causes her to have sudden “pain crises” in her stomach, legs, hands, feet, and back. She suffers from reoccurring fevers and infections due to her illness. At age 3, Amari was having frequent headaches, and results of an MRI scan showed that she had Chiari malformation. This occurs when the skull is too small and the brain becomes crowded, forcing the cerebellum down into the spinal column. Symptoms include headaches, balance issues, neck pain, dizziness, slurred speech, vision problems, difficulty swallowing, and numbness. Now Amari gets an MRI every 3 months to monitor this development. At her last check-up, doctors found a lesion in her brain that they are keeping a close eye on.

Amari took penicillin until she was 5 years old, but has since switched to folic acid and Hydroxyurea to treat the symptoms of sickle cell and Chiari malformation. While Hydroxyurea reduces “pain crises,” it increases the risk of infections, and there is some concern that long-term use of this drug may cause tumors or leukemia. For now, Amari is focused on a treatment plan that is successful in avoiding crises, relieving symptoms and preventing complications.

Amari is 8 years old and in the second grade. The sweet and caring young girl is a bookworm that also loves playing with Barbie dolls. She enjoys listening to music by Nicki Minaj and learning to cook in her spare time. The family dogs are her constant companions.

Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Amari; make sure to stay up to date by checking back soon for all of the fabulous details on her extra special wish!

 

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