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鈥檚 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

 

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

As the state鈥檚 premier children鈥檚 hospital celebrated five years in February, serving South Carolina鈥檚 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鈥檚 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鈥檚 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鈥檚 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.

鈥淪eeing and reading about Easton鈥檚 story from five years ago really took me back,鈥� said Darrell. 鈥淚t reminded me of the busyness and organized chaos of that day, involving Easton鈥檚 move to the new MUSC Shawn Jenkins Children鈥檚 Hospital.鈥�

After spending six months in the NICU and pediatric intensive care unit (PICU), fast forward five busy years later, and Darrell describes Easton鈥檚 overall health and progress as good. 鈥淗e鈥檚 an active, energetic, fun, sports-loving boy,鈥� he said, describing Easton鈥檚 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鈥檚 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 鈥� a way for Easton鈥檚 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鈥檚 Health pediatrician ; pediatric ear, nose and throat (ENT) specialist ; pulmonary and sleep medicine physician ; pediatric neurologist plus a crew of nurses, therapists, technicians and support personnel.

鈥淗aving a dedicated children鈥檚 hospital with pediatric specialists involved in Easton鈥檚 care is so invaluable. We made many connections with nurses, staff and ICU families from all over the state. We鈥檝e 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,鈥� he said.

 

White, who has been involved with Easton鈥檚 ENT airway surgeries, marvels at his young patient鈥檚 progress. 鈥淓aston 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,鈥� said White.

For now, Easton鈥檚 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 鈥�  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鈥檚 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.

鈥淥ur focus has always been on, 鈥楬ow do we keep Easton healthy today, and how do we do it for the long term?鈥欌�� said Darrell, sharing his and Ashley鈥檚 challenges and anxieties as parents and caregivers.

鈥淚t鈥檚 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鈥檙e always on high alert,鈥� he said.

So what鈥檚 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鈥檛 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鈥檚 reached this milestone in what鈥檚 already been an exciting life journey.