Dayton teen receives life-changing gene therapy thanks to partnership between Dayton Children’s and Nationwide Children’s

A transformative new chapter is unfolding in sickle cell care for local families, thanks to the powerful collaboration between Dayton Children’s Hospital and Nationwide Children’s Hospital. Seventeen-year-old Carlos A., a Dayton resident living with sickle cell disease (SCD), is now thriving at home—pain-free—after becoming one of the first patients in the nation to receive CASGEVY™, a cutting-edge gene therapy recently approved for clinical use. 

Carlos’ journey with sickle cell disease began at just one year old. For years, he endured severe pain crises, organ damage and frequent hospitalizations. But thanks to Nationwide Children’s and Dayton Children’s one program, two campus approach to bone marrow transplants, Carlos was able to receive this groundbreaking therapy with the support of both institutions every step of the way. 

“Thanks to the active collaboration between Nationwide Children’s and Dayton Children’s, Carlos’ care following discharge will continue closer to his home,” said Mukund Dole, MD, pediatric hematologist-oncologist at Dayton Children’s Hospital and program director of the West Central Ohio Comprehensive Sickle Cell Center in Dayton.

“It is truly wonderful to be able to work together in this way to nurture this kind of outcome for a patient with sickle cell disease.” 

Carlos’ 18-month journey to gene therapy included close coordination between his Dayton Children’s care team and specialists at Nationwide Children’s. He received monthly exchange transfusions, multiple rounds of stem cell mobilization, chemotherapy and finally, the CASGEVY infusion—a CRISPR-based therapy that reactivates the body’s ability to produce fetal hemoglobin. The result: red blood cells that can once again flow freely, without causing the painful blockages that define sickle cell disease. 

“Carlos has been through a very traumatic journey with his sickle cell disease, so when we presented this gene therapy option to his family, they were excited to pursue it,” said Hemalatha Rangarajan, MD, pediatric stem cell transplant physician at Nationwide Children’s. “The type of gene therapy Carlos has undergone resulted in a reawakening of the fetal hemoglobin, the hemoglobin that is present in utero. Now, Carlos is making his own fetal hemoglobin, which should not cause further sickle cell crisis.” 

While the infusion itself took less than an hour, the impact is lifelong. Carlos is now pain-free and optimistic about what lies ahead.  

“I want to enjoy life before I get to the grind. I want to go outside for longer, be in extreme temperatures for as long as I want, because my physical strength can be up for it,” said Carlos. “I wish that this had been available earlier in my life, and I hope that a lot more kids get access to this, not just me.” 

With recovery now underway, Carlos will continue his follow-up care at Dayton Children’s, thanks to the shared program’s integrated approach. This joint effort ensures seamless continuity of care, from gene therapy consultation through long-term monitoring and support. 

“We didn’t think people cared enough about sickle cell, because it only affects a certain demographic of Americans,” said Carlos’ grandmother, Crystal Sullivan. “Now, Carlos has his freedom. We can finally do whatever he wants—without fear of pain.” 

Nationwide Children’s became an authorized treatment center for CASGEVY™ in December 2023. The therapy, which uses CRISPR technology to edit a patient’s own stem cells, is the first of its kind and represents a promising leap forward in the search for a cure.