After Two BMTs, Nene Knocked Out Beta Thalassemia

Diagnosed at birth with a rare pediatric blood disorder, Nene endured two blood and marrow transplants (BMT) with the guidance of the hematology and oncology department at Children’s Healthcare of Atlanta before he turned 5.

Five-year-old Nene was so excited to start kindergarten last year—especially since he had to skip out on pre-K the year before due to a blood disorder.

An early diagnosis

When Nene’s newborn screening came back abnormal, his mom, Afua Antwi, was referred to the hematology team at the Aflac Cancer and Blood Disorders Center of Children’s. Additional bloodwork revealed that Nene had beta thalassemia, a blood disorder that reduces the production of hemoglobin.

Afua and her husband, Frank Amoyaw, worked closely with Marianne E. Yee, MD, pediatric hematologist and oncologist, to learn exactly how Nene’s diagnosis would be treated. Dr. Yee started Nene on monthly blood transfusions when he was 6 months old, along with daily iron chelation medication to help remove excess iron from his body due to his transfusions.

Double transplants

When Nene was 2 years old, Dr. Yee and her team decided that he was ready for a BMT, a procedure that can cure beta thalassemia. Before the transplant, Nene had several months of chemotherapy treatments to destroy his unhealthy blood cells and help his body get ready to accept donor cells. This preparation required isolation—no day care and no friends or family to play with—but doctors in the center helped Nene’s whole family understand the BMT process, and he stayed strong and smiling through the preparation and transplant.

A year later, however, doctors noticed that Nene was losing donor cells. He started experiencing stomach pains and had to be admitted to the hospital. Afua and Frank received devastating news: The transplant had not worked.

“Thankfully, the donor gave us twice as many cells as Nene needed for his first transplant,” says Afua, “so we were able to try again.”

The thought of Nene undergoing his first BMT at age 2 was scary, and it wasn’t any easier when he was nearing age 4 and understood what the preparation meant he’d miss out on. But Nene was a champ. “He dealt with all of it well,” Afua says, beaming. “The first few days after the transplant were hard on Nene, but he bounced back and was full of energy.”

Nene’s second BMT, at just shy of 4 years old, was a success.

Nene, Afua and Frank today

Today, the outgoing, outspoken little boy who loves Hot Wheels and Transformers is really enjoying going to kindergarten. He also doesn’t mind going to follow-up appointments with the team in the center to confirm he’s not losing donor cells. “He’s been so good,” Afua adds. “He has so much energy and is doing well. The doctors have also been great with us.”

Since Nene’s diagnosis, Afua and Frank have learned that beta thalassemia is a genetic disorder and that they and their twin daughters are all carriers, though none of them show symptoms. If Nene or his sisters want to have children someday, they’ll know to plan for testing and treatment if needed.

Afua and Frank will forever be thankful to the Aflac Cancer and Blood Disorders Center team for healing their son, and they couldn’t be happier with the staff at the center. “They make the children feel at home,” Afua says, “and they do everything possible to make the families feel OK.”