Sickle Cell Anemia

Sickle cell disease is a group of inherited conditions that affect the shape of red blood cells. Instead of being round and flexible, the cells become stiff and sickle-shaped, blocking small blood vessels and causing extreme pain, organ damage, and other serious complications.

When Erin first learned that her daughter Alana had sickle beta plus thalassemia, a milder form of sickle cell disease, she feared the worst. However, two years later, her younger daughter, Zoey, received a diagnosis of sickle cell anemia, the most severe form of sickle cell disease.

Both girls were diagnosed through standard newborn screening and notified of their results at just two weeks of age. While they both have a form of sickle cell disease, their experiences have been dramatically different.

Alana’s early years were shaped by frequent viruses but as her immune system improved, her health stabilized. “She hasn’t had an emergency event since she was four,” Erin said. Now, Alana is thriving and she has not had many medical issues related to her form of sickle cell disease.

Zoey’s journey with the more severe form of sickle cell disease has been much more difficult.

At just three months old, Zoey began experiencing intense pain and swelling—signs of early pain crises that would continue to escalate. “She was very somber. Other kids want to run around and play, while for Zoey, her legs hurt so bad she’s limping,” Erin shared.

As Zoey’s symptoms worsened, Erin knew her daughter needed more specialized care. She began researching the best treatment options and found herself drawn to Children’s of Alabama. When Zoey was just six months old, Erin made the life-changing decision to move her family from Mobile to Birmingham.

By the time Zoey turned five, her pain crises had become more frequent and severe. She developed increased blood flow in the brain, placing her at risk for having a stroke. To help manage the condition, she began receiving monthly blood transfusions. “She hates needles, and it was very scary,” Erin recalled. “She couldn’t understand why she had to go through it while other kids didn’t.”

Then, in January 2024, Zoey’s condition took a frightening turn when she suffered a transient ischemic attack. “It was so scary,” Erin said. “She kept passing out and running into things. I was driving her 100 miles per hour to get her to the hospital.” Doctors at Children’s performed an emergency procedure through the femoral artery to restore the blood flow to her brain. While the symptoms of this stroke-like event resolved with her treatment, Zoey had a MRI, which identified  Moyamoya, a rare complication of sickle cell disease that affects blood vessels in the brain. 

Despite the fear and uncertainty, that crisis became a turning point.

Following the stroke-like event, Zoey’s care team determined she was finally old enough to receive a port—a small medical device implanted under the skin to make transfusions easier and less painful than repeated needle sticks. “It has made such a difference,” Erin said. “Transfusions are now easier, and her pain is better managed.”

The family continues to hope for long-term solutions, including a larger port as Zoey grows and, ultimately, a cure.

Through it all, Zoey remains a bright light in their lives. “She is still such a joy,” Erin said. “She is so caring and loving. She wants to help other kids. She wants to understand her diagnosis and treatment. She’s so creative and loves anything related to art.”

And even with everything she’s been through, Zoey looks forward to visits to Children’s of Alabama. “Although it’s hard, she still loves going. She’s so excited to see her doctors. She calls them her ‘friends’. It feels like they're our family now.”