My name is Zachary I am an adorable, funny, happy energetic 4 1/2 year old little boy. I was born profoundly deaf. This was a huge shock to my family. They had never known anyone with hearing loss. Through modern technology, cochlear implants gave me the gift of sound. My language has developed age appropriately and I'm thriving.
I have issues with my balance. As I get older, I’ve noticed more of a difference between me and my friends. My parents instinct told them to test me for Usher Syndrome. We found out this past November that I have Usher Syndrome type 1F. Fear, panic and down right anger has consumed my family. As if being deaf and overcoming that obstacle was not enough, we have learned that I will gradually lose my vision.
Usher Syndrome is the leading cause of deaf-blindness in the world. The major symptoms of Usher Syndrome are hearing loss, poor balance and an eye disorder called retinitis pigmentosa, or RP. RP first causes night blindness, which I already have, then loss of peripheral vision and eventually total blindness through the degeneration of the retina. While it varies per individual, vision issues can become severe by teen to young adulthood. We are in a race against time to save my vision!
Usher 1F Collaborative is a 501c3 nonprofit foundation whose mission is to fund medical research to find an effective treatment to save or restore the vision of those with Usher 1F! There is currently NO CURE!
Please help us invest in research to develop an effective treatment for Usher 1F