My name is Lilliana Cancellieri. Everyone calls me Lilly. I was given an initial diagnosis of severe-to-profound deafness at birth and there started a long journey of fighting for my future. My parents were my champions until I became my own. I was Cochlear implanted bilaterally at 8 and 28 months. From there, I took off running into birth-to-three programs and then preschool, PreK, and so on. I was getting new mappings every month, I gave presentations to my peers on my hearing loss, I met with my teacher of the deaf weekly. I was even the first kindergartener in my school district to sit in on my own planning and preparation meetings. While an aggressive approach, I know now it was the right one. For as long as I’ve gotten to know myself, I have always strived for more and better. I have always been loud and proud and the brightest student in the classroom.
For 12 years, nothing was going to bring me down. One day in the summer, getting ready for the upcoming school year, I went in for a routine eye exam. My doctor told my mom they didn’t like the way my retinas looked. I got sent to a specialist. One specialist turned to another which turned to three. One diagnosis became another. I have Usher syndrome type 1b. I already lost my hearing and I was told I’d be totally blind by the time I was 25. I felt like I’d been lied to my whole life. I felt betrayed by the body I thought I had harnessed. I felt the darkness closing in. I also just started middle school and I didn’t want to think about anything else, so I pushed it down. I pushed away my existing deaf community, and completely blocked off a newfound blind one. My parents became my champions once again.
They heard Ava’s Voice, and they followed, dragging me in tow. I tried my hardest to meet other kids like me and to find my new identity, but nothing truly happened until I found myself at USHthis Camp in the summer of 2019. I remember how shaky I was when I arrived, but I also remember how full my heart was when it came time to leave. Now its 2024, and in those 6 years since the first camp, I am a person I didn’t think I could be when I was 12. My growth has been immense. In that, I started as a camper and I have now been a mentor for several years now. In most recent camps, it’s been encouraged to have one word that describes what camp means to us. Immediately one word comes to mind: everything.
USHthis Camp means everything to me. It gave me my life back. All the confidence, positivity, and the voice I had prior to my diagnosis was back. I became whole again. At first it was just for that one week, then I learned that it goes on throughout the entire year. It goes on into my future as well. USHthis has connected me to the most amazing people I’ve ever met in my life, my USHfam, and connected me to my future both professionally and philanthropically. This past USHthis camp in Michigan, I realized my true value in being a voice for others and those who haven’t yet found their own. I want to see the world, I want to experience everything, but most of all, I want to give back everything I was blessed with to the next generation. Like everyone, I don’t yet know what the future holds, but in this moment I choose to light the way forward and through it.
My vision may be getting darker, but my vision for the future gets brighter by the day.