Before CHARGE syndrome became part of our daily life, I never truly understood how powerful community connection could be. Hospital rooms, long therapy days, and the unknown can feel incredibly lonely but sometimes, the right people walk into your life at exactly the right moment.
While we were inpatient during one of the hardest seasons of our journey, we were put in contact with another CHARGE family. What started as a simple text conversation quickly became a friendship that changed everything for us. In a time filled with uncertainty, she became a source of understanding without explanation, encouragement without pressure, and hope when we needed it most. When Emily and Jackson came to the hospital to meet us for the first time, we suddenly didn’t feel alone in the CHARGE world.
She invited us to our very first Walk & Roll event at the School of the Blind in St. Louis. That was an invitation into a community that truly “gets it.” It showed us what advocacy truly looks like, what belonging feels like, and how powerful it is when families come together with a shared purpose.
During this time, while we were still inpatient, something incredible happened back home in our rural small town. Our family and friends organized a walk in honor of Ashor! Even from our hospital room miles away, we could feel the love and support surrounding us. It reminded us that awareness doesn’t just happen in big cities or at large events. It starts with people who care enough to show up.
Last year, we hosted another Walk & Roll in our hometown, the second one in honor of our Ashor. Seeing friends and family come together was overwhelming in the very best way. Each step taken and each stroller pushed helped spread awareness of CHARGE syndrome and the realities families like ours face every day.
This year, our goal is simple but meaningful: make it bigger. Not just in numbers, but in impact. We want more people to learn about CHARGE, more families to feel seen, and more children like our son to grow up surrounded by acceptance and opportunity.
We walk and roll for the therapies, the milestones, and the victories that may look small to the outside world, but feel huge to us. We walk and roll for the friendships that begin in hospital hallways and continue long after discharge. We walk and roll so that no parent facing a new diagnosis feels as alone as we once did.
Most of all, we walk and roll because CHARGE has taught us that community can turn the hardest chapters into stories of strength, resilience, and hope. Here’s to another year of raising awareness of CHARGE syndrome and spreading love and laughter in honor of our Ashor!
