Seven-Month-Old Baby with Rare Disease Has Successful Bone Marrow Transplant

Robin Rawls was holding her newborn shortly after giving birth on November 23, 2016, when she heard the song “You are My Sunshine” on television. When it was over, Mrs. Rawls looked down at her beautiful little girl, Denniya (pronounced Da-nuy-a) Lekole, and sang the song to her. Denniya smiled — it’s been their song ever since.

Denniya’s father, Dennard, was ecstatic to finally have a girl after having five sons and Mrs. Rawls was happy to have her fourth child – split evenly with two boys and two girls. “We were so excited to have our first child together,” says Mrs. Rawls.

At three and a half months old, Denniya had a fever that wouldn’t break. The Cleveland couple took her to the Emergency Department (ED) at a local hospital. She was prescribed some over-the-counter medication, which didn’t help. “Since we both have older children, we knew that her fever should have broken. We went back a week later,” explains Mr. Rawls.

In the ED for a second time, the couple was told that their daughter was very ill — possibly with leukemia — and probably wouldn’t make it through the night. “We were completely shocked and in disbelief,” says Mrs. Rawls. “We thought she just had a cold.”

Denniya was transferred to the Pediatric Intensive Care Unit at Cleveland Clinic Children’s. “Denniya was a very sick baby. She had a fever, her belly was distended and her blood count was low. She was on the edge of death,” says Rabi Hanna, MD, chair for Pediatric Hematology-Oncology and Blood and Marrow Transplant at Cleveland Clinic Children's. “From her symptoms, I suspected she had hemophagocytic lymphohistiocytosis (HLH), a very rare disease.”

“I’m so grateful for Dr. Hanna and all of the Cleveland Clinic caregivers we came into contact with — from housekeeping to nurses to doctors. They were all part of Team Denniya.”

HLH is a life-threatening cancer-like disorder in which the body's immune system does not work properly. Certain white blood cells — histiocytes and lymphocytes — attack healthy blood, and organs such as the spleen and liver, causing them to enlarge and fail to work. The disease can be caused by a defect in genes or an infection, malignancy or autoimmune disorder. When it is inherited, it usually affects infants and children.

While waiting for test results, Denniya began steroid therapy. “Time was of the essence, it was imperative that we get medication flowing through her little body,” recalls Dr. Hanna.

The test results confirmed Dr. Hanna’s suspicion — Denniya had HLH. The physician sat down with Mr. and Mrs. Rawls to explain what that meant. “Dr. Hanna told us that our baby would need a bone marrow transplant and she’d get worse before she got better,” says Mr. Rawls.

Denniya did not have an HLA matched family member so she was placed on the National Marrow Donor Program’s registry. Because Denniya is black, the possibility of finding a good match was difficult. “African Americans tend to be represented at much lower rate than other races in the national marrow donor registry, making HLA matched donors rarer than other population,” explains Dr. Hanna.

Denniya had chemotherapy therapy twice a week for eight weeks — to help her go into remission so her abnormal immune system wouldn’t attack her organs. She also had steroid therapy. “The conditioning therapy essentially wipes out the immune system and kills any abnormal cells,” explains Dr. Hanna.

During the conditioning therapy, Denniya’s HLH flared up. This worried her physician because a set-back could mean that Denniya might not survive. Dr. Hanna prescribed a new set of medication and Denniya, yet again, fought back to recover.

The Rawls’ were unable to work during this time and lost the house they were renting. They stayed with Denniya at the hospital around the clock because of their daughter’s critical health. “It was really difficult for our younger children, it was hard for them to understand why we couldn’t be with them like we used to be,” remembers Mrs. Rawls.

To their amazement, a donor — a perfect match — was found within two months. At seven months old, Denniya had the transplant — the youngest patient to ever undergo a bone marrow transplant at Cleveland Clinic.

On transplant day, the transplant team sings “Happy Transplant Day” to the tune of “Happy Birthday” to patients. But, this time, they sang a different song — “You are My Sunshine.” “It was only fitting we sing that on the day of Denniya’s renewed life,” says Dr. Hanna.

The transplant was a success. After a month of recovery, Denniya and her parents went home.

“It’s amazing what the donor did. He made a personal sacrifice that saved our baby girl; it’s an awesome thing that he did,” says Mr. Rawls. Mrs. Rawls adds, “I’m so grateful for Dr. Hanna and all of the Cleveland Clinic caregivers we came into contact with — from housekeeping to nurses to doctors. They were all part of Team Denniya.”

Denniya continues to do well and is monitored at Cleveland Clinic Children’s. Her parents were tested to see if they were carriers of the disease — both are carriers.

The Rawls’ know that it took tremendous medical care and maybe a little something extra for their baby to survive. Playing on his daughter’s first name, Mr. Rawls says, ”You can’t Denniya miracle.”