When Ava was diagnosed at three years old, it felt like stepping into the ring for yet another grueling round in a fight I didn’t sign up for. Every “she couldn’t, wouldn’t, shouldn’t” was a blow—right hooks, uppercuts, and punches to the gut. We had just found some balance after addressing her hearing loss and adjusting to preschool, and then came the diagnosis: Usher syndrome.

To those reading this who may have just received the same news, I want you to know: YOU ARE NOT ALONE.

When we first shared Ava’s diagnosis, the response was often, “I’m sorry,” accompanied by quivering lips and pity-filled eyes. I found myself comforting others while defending a future for Ava they couldn’t imagine. I believed—deep in my core—that she could do anything. But even with that fierce determination, I longed for connection with others who truly understood what we were going through.

Over time, I realized my goal wasn’t to “fix” Ava. I just wanted her to be comfortable in her own skin, proud of who she is, and surrounded by a community that celebrated her. As her mom, I would never fully grasp her experience, but I could work to ensure she was never alone in it.

In 2015, after years of support from family and friends eager to help, we launched Ava’s Voice. At the time, our mission was simple: connect with other families who understood and educate our local community about Usher syndrome. Little did we know, that mission would evolve into something far greater—guided by the needs of the community and the belief others had in Ava.

Professionally, I began working with the DeafBlind community in 2013. Through this work, I saw gaps that needed filling, especially for kids like Ava. Watching her form relationships with peers who shared her journey inspired us to develop programs that addressed those unmet needs.

With the support of colleagues, volunteers, and countless believers, Ava’s Voice grew into a movement. We built programs that connect families, foster self-advocacy, and provide kids with the tools to understand their diagnosis and build critical life skills—all in safe, empowering environments.

Today, Ava’s Voice has connected hundreds of USHearts around the world. Ava often credits me for what we’ve achieved, but the truth is, it’s a testament to love—the unique power of the heart. Every person who has walked this path with us has helped shape what Ava’s Voice is today.

Ava thinks I’m strong, but she is the strongest person I know. Her resilience and wisdom inspire me daily. She has taught me more than I could have ever taught her—about fairness, strength, and leading with heart. She uses her voice not for herself but to lift others, and that is her greatest gift.

For every family navigating this journey, we hope Ava’s Voice becomes the community you need—a place where you find strength, understanding, and a shared belief in the remarkable potential within all of us.