Seventeen-year-old Sani’Yah Johnson and her 7-year-old sister, Rah’Niyah, both received bone marrow transplants that cured their sickle cell disease. Their donors were two of their siblings.
Ericka Johnson, mother of six, said about her daughters: “Rah’Niyah is like a little lady in a baby’s body. I have great kids. My children all get great grades.” She described the outcome as “amazing,” adding, “They got a new life.”
Sani’Yah was diagnosed with sickle cell disease shortly after birth following a routine blood test. The disorder causes red blood cells to form an abnormal shape, leading to blockages in blood flow. Ericka Johnson said she knew she carried the trait but was surprised to learn her husband also had it, which meant their children could inherit the disease.
Sani’Yah was treated at Nemours Children’s Health and Wolfson Children’s Hospital in Jacksonville through a collaborative program for sickle cell care. For nearly ten years, she avoided major complications before experiencing acute chest syndrome at age nine and a stroke at thirteen. Her younger sister Rah’Niyah was also born with the condition.
Children with parents who both carry the sickle cell trait have a 25% chance of having the disease. Bone marrow transplant and recently approved gene therapy are currently recognized cures for sickle cell disease. Matches within immediate families are uncommon; however, testing showed two of Johnson’s other daughters—London and Lyn’Niyah—were matches for Sani’Yah and Rah’Niyah.
“They were all in, 100%,” said Ericka Johnson about her daughters volunteering as donors. “They knew they were saving their sisters’ lives, but I was also upfront with them that it wouldn’t be an easy process, so they knew what to expect.”
Edward Dela Ziga, MD, MPH, pediatric hematologist/oncologist at Nemours Children’s Health and director of the Blood and Marrow Transplantation Program—a collaboration among Wolfson Children’s Hospital, Nemours Children’s Health and Mayo Clinic—explained: “When you have full matches within the family, that is the best form of transplant you can have because the outcomes are much better.”
Both donor and recipient undergo extensive testing before transplantation to ensure organ function can tolerate treatment. Recipients receive chemotherapy to remove affected cells from their marrow before donor stem cells are infused intravenously.
On June 22, 2023, Sani’Yah received her transplant from London; nearly one year later Rah’Niyah received hers from Lyn’Niyah. Both recipients recovered well after surgery.
Johnson reported noticeable improvements soon after: both girls are now considered cured of sickle cell disease. Sani’Yah has completed care under the Sickle Cell Program while Rah’Niyah’s follow-up appointments have become less frequent.
“I’ve been with Wolfson Children’s and Nemours Children’s for 17 years, so they’re like family to me,” said Ericka Johnson regarding her experience with hospital staff. “They did everything to make sure my family was comfortable. Every need we had, it was taken care of.”
Looking ahead for her daughters’ future health prospects Dr. Ziga stated: “The sky is the limit,” he said. “They can live their lives without any limitations.”
For more information on services related to sickle cell disease or details about Wolfson Children’s Blood and Marrow Transplantation Center—a collaboration between Nemours Children’s Health Jacksonville and Mayo Clinic—visit this page (https://www.wolfsonchildrens.com/services/cancer-blood-disorders/blood-and-marrow-transplantation-center). Those interested in supporting patients like Rah’Niyah and Sani’Yah can find giving opportunities here (https://foundation.baptistjax.com/give).
