You’re invited! As friends and family who walk beside me, as believers, to join in raising awareness and sharing the impact this camp has had on my life.
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. 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. 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 while 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. One specialist turned to another which turned to three. One diagnosis became another. Usher syndrome type 1b. I already lost my hearing and doctors told me I’d be totally blind by the time I was 25. I felt betrayed by the body I thought I had harnessed. I felt the darkness closing in. I pushed away my existing deaf community, and completely blocked off a newfound blind one. My parents became my champions all over 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 in 2025, I am someone I didn’t think I could be when I was 12. In that, I started as a camper and I have now been a mentor for several years. 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. I became whole again. At first it was just for that one week, then I learned that it goes on throughout the year. It goes on into my future. USHthis has connected me to the most amazing people I’ve ever met, my USHfam, and connected me to my future both professionally and philanthropically. I now know 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 all that I was blessed with to the next generation. Like everyone else, 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.
Support my journey!
