My name is Shannon Boelter and I am 36. I am from Minnesota and proud. I have CHARGE syndrome that was discovered when I was a baby. Growing up, I had a lot of struggles with social situations and anxiety. I went to Metro Deaf School in Minnesota, and I use American Sign Language as my first language. I am very proud of that. Read the full article…
People often looked at me growing up and felt concerned about how I would be successful living with CHARGE syndrome. Well, let me tell you, I graduated from Gallaudet University in 2014 with a degree in Family Child Studies. Yep, I did it. As of 2026, I have worked at Metro Deaf School for ten years as a DeafBlind Intervener, and I love it. I do this work because children like me, DeafBlind, with CHARGE syndrome, need a role model. They need to see an adult like them and know they can grow up and be successful too.
I also love writing, trivia, history, and travel. Last summer, I did a solo trip to Boston and loved it. Nothing about CHARGE can stop me. I always tell myself to go enjoy what the world offers, while also knowing my own limits. For example, climbing a mountain? Please no. My balance would be crying. But your limits do not mean you have to stop. There is still so much you can do. Just open your mind and heart and explore what is out there.
