From tiny warrior to kindergarten explorer

Five-year-old Easton Brace loves to shoot a basketball and keep up with his older and active sisters and brother. More than five years ago, Easton’s parents, Darrell and Ashley Brace, wondered if their youngest son would be able to do those things or live an active and healthy life following an upsetting medical diagnosis. Not to mention the fact that he had spent his early days at the neonatal intensive care unit (NICU) at the MUSC Shawn Jenkins Children’s Hospital.

 

Easton’s story is like hundreds of happy success stories of children who have visited or spent time at the MUSC Shawn Jenkins Children’s Hospital and Pearl Tourville Women’s Pavilion since it opened its doors in February 2020.

As the state’s premier children’s hospital celebrated five years in February, serving South Carolina’s young patients and their families, it is fitting to reflect on that time of physical transition when 157 children, their families, clinical staff and volunteers experienced move-in day from the old Children’s Hospital to the new 625,000-square-foot facility.

Among those affected was then 4-month-old Easton, a patient in the NICU, and Darrell, who accompanied his son along with a team of nurses and respiratory therapists in an ambulance for the slow drive across campus. It was during Easton’s stay at MUSC when specialists diagnosed him with congenital myasthenic syndrome (CMS), a rare condition that causes permanent muscle weakness and worsens with physical activity. During infancy, the condition can affect a child’s feeding, swallowing and breathing, plus impede general motor skills. The prognosis for patients living with CMS can vary from a mild risk to life-threatening depending on the form of CMS and the muscles that are affected.

“Seeing and reading about Easton’s story from five years ago really took me back,” said Darrell. “It reminded me of the busyness and organized chaos of that day, involving Easton’s move to the new MUSC Shawn Jenkins Children’s Hospital.”

After spending six months in the NICU and pediatric intensive care unit (PICU), fast forward five busy years later, and Darrell describes Easton’s overall health and progress as good. “He’s an active, energetic, fun, sports-loving boy,” he said, describing Easton’s success playing winter youth basketball in their local community league.

 

According to Darrell, what has been challenging for them as parents is keeping up and managing the medical complexities associated with his son’s condition. Since birth and his CMS diagnosis, Easton has undergone several surgeries from airway reconstruction, a tracheal removal and tracheostomy closure surgery to bronchoscopies and routine bronchial lavage procedures – a way for Easton’s doctors to check his airways for infection in his lungs. For some CMS conditions, pulmonary issues are a common concern among patients as they are prone to suffering from recurrent respiratory insufficiency.

Darrell, who is a nurse at the Ralph H. Johnson VA Medical Center with a background in critical care, knows Easton is lucky to have a team of pediatric specialists involved in his care. He specifically mentioned MUSC Children’s Health pediatrician Sara Ritchie, M.D.; pediatric ear, nose and throat (ENT) specialist David R. White, M.D.; pulmonary and sleep medicine physician Chung Lee, M.D., Ph.D.; pediatric neurologist Purabi Sonowal, M.D., plus a crew of nurses, therapists, technicians and support personnel.

“Having a dedicated children’s hospital with pediatric specialists involved in Easton’s care is so invaluable. We made many connections with nurses, staff and ICU families from all over the state. We’ve carried some of those relationships as friendships, even today. Pediatric care team members such as Paige Merrell, O.T., Lauren Feuerhammer, R.T. and Martha Domermuth, R.N. were among many who are special to us. Having a community of people like this has provided us long-term expertise and support as Easton continues to grow and receive quality medical care through MUSC,” he said.

 

White, who has been involved with Easton’s ENT airway surgeries, marvels at his young patient’s progress. “Easton is an amazing kid. His story is a good example of how a baby born with super complex medical problems, combined with appropriate and supportive home care from his family and matched with coordinated quality medical expertise, can demonstrate over time that Easton can progress to living a normal life,” said White.

For now, Easton’s parents and family continue to watch and manage his complex medical needs, which include navigating numerous medical appointments, Emergency Department visits and after-hours care –  whether downtown or in North Charleston. Add to that disease-related complexities, medication adjustments and ever-changing treatment plans and life can all be hectic, said Darrell.

One of their biggest concerns is Easton’s recurring respiratory problems, such as pneumonia and lung infections, which can escalate quickly. During one particularly critical emergency visit, his specialists discovered that Easton had a blood clotting disorder, which further complicated his care. As a result, his team now includes a pediatric hematologist to assist with consultations and medical procedure planning.

“Our focus has always been on, ‘How do we keep Easton healthy today, and how do we do it for the long term?’” said Darrell, sharing his and Ashley’s challenges and anxieties as parents and caregivers.

“It’s been a lot to keep up with on a daily basis and even more so when Easton goes down with an illness, fall or whatever. We’re always on high alert,” he said.

So what’s next for Easton in 2025 and beyond?

Both parents are excited as Easton will begin kindergarten this fall. With school being a full-day, Darrell can’t help but to wonders how Easton will do, keeping up with school and daily tasks. Everyone, including his siblings Ellington, Wilston and Remington, are excited that he’s reached this milestone in what’s already been an exciting life journey.