meet our patient ambassador Stevie!
Stevie is a bright elementary schooler with a knack for reading and music and isn’t letting a rare diagnosis hold him back. Diagnosed very young with a rare genetic condition, Muenke Syndrome, Stevie’s life began with surgeries and specialist visits. Today, Stevie is thriving!
The day after Stevie was born, his NICU care team noticed his head shape looked a little off. They recommended Stevie have imaging to get a closer look and found he had craniosynostosis, where the bones in a baby’s skull fuse too early. Stevie was later diagnosed with Muenke syndrome — a rare genetic condition that causes differences in the skull and face. Stevie spent about a month in the NICU before meeting Rob Lober, MD, PhD, FAANS, pediatric neurosurgeon at Dayton Children’s.
“It was scary,” Emily Kesner, Stevie’s mom recalled, “but it was comforting to sit down with Dr. Lober, get our questions answered, and make a plan for what we could do to help him grow.”
Through every step of Stevie’s journey, his care team has been committed to supporting him and his family, and making sure they don’t feel alone.
As a nurse at Dayton Children’s, Emily knows the above and beyond care Dayton Children’s provides. As a mom, what stood out most was how the team cared for her.
“I appreciate them treating me and talking with me like a mom, not just a fellow nurse or employee,” she said. “They’re still so wonderful and ask about Stevie when they see me. It’s nice to know they still think about him, and they’re here for us if we need anything.
Stevie’s first surgery
At just five months old, Stevie underwent his first surgery with Dr. Lober and Salim Mancho, DO, FACS, plastic surgeon. Together with their teams, they carefully removed two strips of bone from Stevie’s skull to make space for his brain to grow. After the surgery, Stevie wore a specialized, custom helmet for about 18 months to help shape his head so his brain and skull could grow the way they were supposed to. His family still has the helmets as a reminder of how far he’s come — including one decorated with his favorite team, Ohio State!
From the beginning, Stevie’s family was told that children with Muenke syndrome might face developmental delays or learning challenges. Stevie’s parents were scared to hear that, but hopeful that Stevie would be able to do things just like other kids his age.
With early support, therapy, and consistent care, Stevie not only kept up — he excelled!
“He recently tested gifted in reading,” his mom shared. “So that has been cool to watch him break through those barriers and do more than we ever thought he could.”
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