Baby with Rare Disease Goes Home after Successful Bone Marrow Transplant

Cleveland Clinic Children's Doctors Treat Hospital's Youngest Bone Marrow Transplant Recipient

Sitting contentedly on her daddy’s lap, dressed in bright pink from head to toe, little Denniya Rawls is a portrait of health.

But it wasn’t too long ago she was on “the doorstep of death,” as Dr. Rabi Hanna described it, when 3-month-old Denniya was rushed to Cleveland Clinic Children’s pediatric intensive care unit (PICU) in March 2017, suffering from a high fever.

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

Dr. Hanna, Chair of the Department of Hematology- Oncology and Bone Marrow Transplant at Cleveland Clinic Children’s, quickly diagnosed Denniya with an extremely rare – and potentially deadly – immune system disorder: hemophagocytic lymphohistiocytosis (HLH). Immediately, Denniya began chemotherapy and blood transfusions to stabilize her condition in preparation for the procedure needed to save her life: a bone marrow transplant.

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Denniya spent over 100 days at Cleveland Clinic Children’s, where she received a life-saving bone marrow transplant.

“If not diagnosed early and treated very aggressively, HLH can often be fatal,” explains Dr. Hanna. “But Denniya is a fighter.”

In fact, when her father Dennard Rawls excitedly found out Robin Rawls was pregnant with their baby girl, he stated, “You can’t deny a miracle.” The phrase caught on, and formed the basis for their daughter’s name, Denniya (pronounced deh-NYE-uh).

RELATED: Cleveland Clinic Children’s Bone Marrow Transplant (BMT) Program

But Denniya could easily have been denied the bone marrow transplant she needed to survive, since African-Americans are underrepresented on the National Marrow Donor Program® registry, called Be The Match®. And since no match was found within her family, Denniya faced long odds in getting a donor before her improved condition would inevitably worsen.

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Denniya was treated at Cleveland Clinic Children’s PICU as she underwent chemotherapy and prepared for a bone marrow transplant.

When a match was found with an anonymous donor (a 54-year-old woman) less than two months later, mom Robin was overjoyed. “Words can’t really explain how grateful we felt,” says Robin. “We are so blessed. Without that donor, it never would have happened.”

Dr. Hanna performed the bone marrow transplant in June, making Denniya the youngest-ever bone marrow recipient at Cleveland Clinic Children’s. Her health and prognosis have improved steadily, and Denniya was able to return home in July – about 100 days after being rushed to the hospital.

Smiling baby upon discharge from hospital after transplant

Robin Rawls calls Denniya her miracle baby.

Now, Robin revels in feeding, bathing and caring for her daughter, instead of “watching other people do it when she was hooked up to all those tubes” in the hospital. Life is, at last, pretty routine for the family other than administering a daily regimen of medications for Denniya and making frequent doctor visits.

They look forward to a normal life for Denniya, one that didn’t seem possible just six months ago when her death appeared to be inevitable. But Robin’s perspective changed soon after they arrived at Cleveland Clinic.

Family of pediatric transplant recipient celebrates hospital departure

The Rawls family was thankful to Cleveland Clinic Children’s staff as they prepared to take Denniya home.

“Dr. Hanna, the nurses, all the staff – I didn’t know a hospital could love her that much,” she avows. “They took care of her and tried to accommodate us as much as they could. They were amazing.”

RELATED: Q&A with Cleveland Clinic Children’s Chair of Pediatric Hematology-Oncology and Bone Marrow Transplantation

And one day, Dennard hopes they will have the opportunity to introduce Denniya to the still-anonymous woman who gave her the gift of life. “Everybody needs help at some time in their life, and for her donor to step up and help was a real blessing.”

Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell anemia or other life-threatening diseases depend on the Be The Match Registry to find a match to save their life. To learn more about how to become listed as a potential donor on the National Marrow Donor Program’s registry, visit https://bethematch.org/.

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