Helping Emmy Live Her Best Life With Sickle Cell Disease

Five-year-old Emmy has bravely navigated many of the painful side effects of sickle cell disease with the help of her family and the skilled care providers at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta.

Swimming is one of Emmy’s favorite things to do. Unfortunately, it’s also one of the many activities that causes her pain. Once, after enjoying one day at the pool, she was hospitalized for 10 days because of the pain in her extremities.

Emmy’s recurrent pain crises most often affect her legs, eyes and head. Her family tries to offer relief at home with narcotics, heating pads and other comforts and distractions. But if those don’t work, they head to the hospital for stronger medications and fluids.

Five-year-old Emmy is one of thousands of children in the U.S. living with the recurring side effects of sickle cell disease. In addition to multiple pain crises, she’s also experienced a life-threatening bout of acute chest syndrome or a blockage of blood flow to the chest and lungs. During this three-week hospital admission, she had a bacterial infection, splenic sequestration (when sickled blood cells become trapped in the spleen), consistent pain and more.

“This was by far the most serious hospital admission, and it proved to us how scary sickle cell can be,” says her mom, Courtney Lott.

After being discharged from the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, Emmy returned regularly to receive blood transfusions under the direction of Amy Yixiao Tang, MD. Over the course of seven months, these transfusions gave her body a break and allowed her lungs time to heal.

“As her mommy, it was so difficult to watch her go through these experiences—to see her in pain, to see her ‘sick eyes’ when a fever would spike, and to watch her writhe in discomfort every time an I.V. was attempted. I wish we could fix it and make it all go away for her. I wish she didn’t have sickle cell,” says Courtney.

“As much as I wish we didn’t have to journey down this unpredictable road, I’m grateful our path led us to Children’s and the Aflac Cancer and Blood Disorders Center,” she adds. “They are our second home, our second family, and I cannot imagine walking this terrifying road without them.”