Sickle cell disease: Kalynn’s story

At 17, Kalynn Holmes-Butler is celebrating her high school graduation, looking forward to a future in fashion design, and continuing to be an inspiration to her family and those around her. Living with sickle cell disease came with debilitating setbacks, but Kalynn was determined to win.

“She’s never let herself feel handicapped because of sickle cell disease,” said Kalynn’s mother, Tamika Butler. “She’s hesitant to ask for help and her disposition has never changed.”

Sickle cell disease is a common inherited blood disorder in which the red blood cells are hard and crescent or “sickle” shaped. These cells become trapped in small blood vessels, blocking blood flow and preventing oxygen from reaching parts of the body. The disorder is extremely painful.

Kalynn has been coming to Methodist Children’s Hospital for treatment since she was four years old. It was then when she experienced her first pain crisis, requiring her first hospitalization and blood transfusion. Living with the worst form of sickle cell disease, Kalynn required multiple blood transfusions to help treat the pain the disorder inflicts.

New treatment option

Not long ago, children with sickle cell disease often died at a young age. For 27 years, the Methodist Children’s Hospital Blood and Marrow Stem Cell Transplant Program has been researching and implementing innovative and safe treatments for patients with the blood disorder. Over the last three years, the program has advanced the ability to offer haploidentical transplants, which use healthy, blood-forming cells from a half-matched donor to replace the unhealthy ones. The program’s success has resulted in notable outcomes for most sickle cell disease patients.

Kalynn’s physicians recommended a bone marrow transplant as an option that could improve her quality of life, ridding her of the debilitating pain crisis episodes. Her father would be her half- matched donor.

“She has a great family and great donor. We rarely see fathers that are like Kalynn’s dad. The strength that he had to go through the process really helped to make Kalynn a better candidate,” said Michael Eckrich, MD, MPH, Medical Director of the hospital’s Pediatric Blood and Marrow Stem Cell Transplant Program. 

Ready for the chance to try a new treatment, Kalynn jumped at the opportunity.

“I was excited to finally be at that point in my journey,” Kalynn said. “I knew that it was going to be hard. They told me some of the symptoms from the chemo I had to do before.”

Successful bone marrow transplant

On April 19, 2019, Kalynn’s father became her donor. It is quite fitting that he was able to help her in this way. The two share a birthday. As her mother puts it, Kalynn was his gift, and he returned the gift 16 years later. The transplant was a success, ridding Kalynn of the blood disorder. Her blood-forming cells are 100 percent her father’s.

New challenges appeared shortly after the transplant. Currently, Kalynn is undergoing six months of apheresis treatment for graft-versus-host disease, which can be an uncommon result of the transplant. She will also need a hip replacement soon, the result of long-term damage caused by her sickle cell disease. Dr. Eckrich expects Kalynn will be pain-free and hopes she will be fully healthy in less than one year.

“I feel very blessed I have amazing doctors and nurses to be able to take care of me,” Kalynn said.

The soon-to-be college student is looking forward to her future. Tamika calls Kalynn her “super girl” because of the strength and poise her daughter radiates every day.

“What I like to tell other people is don’t give up. There’s so much that you can do,” Kalynn said.

Learn more about the Pediatric Bone Marrow and Stem Cell Transplant Program