When Kendra and Lord Cole welcomed their first child in 2017, they envisioned a bright future. Their elation quickly gave way to concern when a newborn screening revealed their daughter Cali had sickle cell disease, an inherited condition in which abnormally shaped red blood cells cannot carry enough oxygen to the body, causing intense pain, organ damage and potentially fatal complications.
In the U.S., the condition disproportionately affects Black and African-American individuals: Nearly one in 13 Black or African-American babies are born with the sickle cell trait, and the disease manifests in one out of every 365 Black or African-American babies.
“No kid deserves to live with sickle cell disease,” Kendra said. “When we thought about our family life and all the things we saw for Cali, that was not a part of the promise we made to her as parents.”
Together, Kendra and Lord resolved to create the healthiest future possible for their daughter. Exploring treatment options, they learned about stem cell transplantation, a groundbreaking curative treatment made possible in part by a team of physician researchers at the Stanley Manne Children’s Research Institute at Ann & Robert H. Lurie Children’s Hospital of Chicago.
The team, including Dr. Sonali Chaudhury, Director of the Stem Cell Transplantation and Cellular Therapy Program, and Dr. Robert Liem, Director of the Comprehensive Sickle Cell Program, were among a few to participate in national trials that found transplanting stem cells or bone marrow from genetically compatible donors can cure many young patients suffering from severe sickle cell disease.
Moreover, the team had developed a safer treatment protocol that reduced the risk of serious side effects from stem cell transplantation for small patients like Cali. At Lurie Children’s, Cali had access to this cutting-edge care.
“Thanks to very recent breakthroughs in research, we have curative options for all patients with moderate to severe sickle cell disease — after having virtually no treatment advances for decades,” Dr. Chaudhury said.
As the Cole family built a relationship with Dr. Chaudhury and Dr. Liem’s teams, they learned that with the right stem cell donor, Cali could potentially be cured of her disease with minimal side effects.
“We had something tangible in front of us, and it was an actual cure,” Lord said. “The barrier for entry dropped.”
After a year-long in vitro fertilization process, Kendra and Lord grew their family with the arrival of their second daughter, Reign, in August 2019. The family of four began the transplantation process for Cali using Reign as her donor in the spring of 2021 — and “never looked back,” Kendra said.
“Cali responded really well,” Lord said. “She was in good spirits the whole time, and had no side effects.” Just 19 days after Cali’s transplant, she returned home with her family. Her speedy, thorough recovery is a testament to clinical advancements that make successful transplants a “kinder, gentler” process for children, Dr. Liem said.
Today, Cali enjoys her day-to-day life without interruptions of intense pain or the lingering threat of grave complications.
“We set up a little pool for her in our backyard this summer, and she said, ‘Wait, it’s too cold for my sickle cell,’” Kendra said. “We answered, ‘Cali, you don’t have sickle cell disease anymore.’”
Kendra and Lord are grateful for the clinical researchers, donors and families affected by sickle cell disease who contributed to the pediatric science enabling their daughter’s cure.
“We’re so happy and blessed that Reign was able to give her this gift of a new life,” Kendra said. “We feel it’s important that we do our best to also serve as a testimony to let other Black families know that this is a viable option for them.”
Since 1992, our Pediatric Stem Cell Transplant Program, part of the Center for Cancer & Blood Disorders and Siragusa Transplantation Center, has performed more than 1,000 stem cell transplants, making it one of the nation's largest pediatric programs of its kind. As the first freestanding pediatric program to earn accreditation from the Foundation for the Accreditation of Cellular Therapy, the program is recognized for its quality, outcomes, multidisciplinary approach to care, research and laboratory expertise. We offer several comprehensive, multidisciplinary specialty clinics, including chronic graft vs. host disease, immune deficiency, long term follow-up and bone marrow failure.