Douglas County girl strong against Sickle Cell disease

Douglas County girl strong against Sickle Cell disease

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DEKALB COUNTY, Ga. -

A'Jana Davis feels like she was born to dance. The Douglas County third-grader likes tap, ballet, jazz and lyrical dance. She even competes. She says, "It's just awesome."

Watching the 9-year old practice at A.D. West Dance Company, you can't see how hard Davis has to fight, just to stay in step.

She looks perfectly healthy. But, she's not. Her mom Donyale Davis says, "She wasn't able to go to her first competition because she was in the hospital, and she was there for about a week, maybe even longer."

A'Jana has Sickle Cell Disease, a common blood disorder passed down through families.

Both of her parents were carriers of the Sickle Cell Trait. A newborn screening test revealed A'Jana has the disease, which causes her typically-round red blood cells – that carry oxygen to her body - to become sickle-shaped, and sharp.

They can become sticky, clogging in her blood vessels, and causing severe bone pain, serious infections, anemia and, sometimes, organ damage. Donyale Davis says she was frightened by what this diagnosis would mean for her only child. She says, "You hear all these stories about what sickle cell is and how bad it is."

Pain is a major challenge. If A'Jana is dancing and gets dehydrate - or swimming and her body temperature drops too quickly – she will have a pain crisis. Dr. Iris Buchanan-Perry - a Sickle Cell specialist with Morehouse School of Medicine - says sometimes there's no trigger. And the pain is intense and unrelenting. Dr. Buchanan-Perry explains, "You might not be doing anything and then all of a sudden you have significant pain. Usually in the long bones, like the arms or the legs. And the pain isn't one little sharp thing, but continuous pain."

A'Jana also has problems with her spleen. She knows a minor infection can land her in the hospital, her mom says. "So if there's somebody sick, she makes sure she stays away from them because she knows a virus for her is different from a virus for one of her peers."

Blood tranfusions at the AFLAC Cancer and Blood Disorders Center at Children's Healthcare of Atlanta at Hughes Spalding help. So do prescription medications.

Bone marrow transplants can cure Sickle Cell disease, but they're complicated and still pretty rare. Dr. Buchanan-Perry says, "The real cure, without complications, would be something like gene therapy. You go in and you make a change in the gene itself, we haven't done that yet. Not in a human."

A'Jana is careful to pace herself, to stay hydrated, to not overdo it. But, her mom says A'Jana copes very well. She says,

"It's not the end of the world. Definitely your child is going to be different." Her parents hope A'Jana's dream - not her disease - to define her life.

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