My name is Silas, I’m four years old and I have Canavan Disease. While I don’t speak through words, my laughter and expressions often speak louder than words ever could. While I am small, I am strong in the battles I’ve faced in my daily life living with Canavan disease. Having such a rare condition can often seem like I am overlooked much like other children who share my condition but I am loved and seen by those who meet me. Sharing my story opens the door for not only me to be seen and hopefully one day treated through medical opportunities, but this also may allow for connection with others who want to be seen. Connecting with other families, sharing experiences and connecting with the world around me in a much greater way could create a meaningful impact that may surpass my lifetime for years to come. Connection, support and love create a life full of meaning. That’s what the purpose of this journey is.