By Ashley Bentley
Raising a child with CHARGE syndrome brings unique challenges, joys, and triumphs — and for military families, those experiences often come with added layers of complexity!
Like many military families, we’ve had to balance frequent moves, new duty stations, and the constant process of rebuilding care networks and support systems. When we arrived at our current base, we expected to enroll our daughter Audrey in the on-base daycare program — a place many military families depend on for stability and community. Living somewhere without family near, this was important for us. But because of her complex medical needs due to CHARGE syndrome, we were told that Audrey couldn’t attend. It was heartbreaking. Being turned away left us feeling isolated and unsure of how to move forward.
However, through persistence and advocacy, things began to change. We worked closely with base leadership, local education officials, and the Exceptional Family Member Program (EFMP) to ensure Audrey received the support she needed. Together, we found a way for her to safely and successfully attend school with her peers. Today, Audrey is thriving in pre-kindergarten at the local elementary school, supported by a one-on-one nurse and a one-on-one aide who help her participate fully in the classroom.
Seeing Audrey walk through those school doors — included, supported, and smiling — was a powerful reminder of the importance of advocacy and community. Every child deserves the chance to learn and grow alongside their peers, regardless of medical or developmental challenges. You have this expectation that your child with differences will be automatically included, but that’s not always the case. Our goal as Audrey’s parents is to ensure that Audrey has equal access to services and opportunity.
As one of the South Carolina State Liaisons for the CHARGE Syndrome Foundation, I’m passionate about helping other military families navigate these same systems. Whether you’re struggling to access childcare, connect with EFMP resources, or advocate for educational support, please know you’re not alone and there is help. It is already overwhelming to have a child with complex needs, but they deserve resources just like anyone else!
