By Rachel Root, Zachary's mom
"Fear, panic and down right anger has overtaken our family. As if being deaf and overcoming that obstacle was not enough, we have learned that our son will gradually lose his vision. This is a cruel, unfair disease. We need to find a cure. I will stop at nothing as his mother to raise awareness about Usher Syndrome type 1F."
My name is Rachel and I am the mother of an adorable, funny, happy energetic 11-year-old little boy. Zachary was born profoundly deaf. This was a huge shock to our family. We had never even known anyone with hearing loss. Through modern technology, cochlear implants gave him the gift of sound. His language has developed age appropriately and he is thriving. We have witnessed a miracle first hand. Zachary has always had issues with his balance. As he got older, I noticed more of a difference between him and his peers. My mother instinct told me to test him for Usher Syndrome. We recently found out that our beautiful little boy has Usher Syndrome type 1F. Fear, panic and down right anger has overtaken our family. As if being deaf and overcoming that obstacle was not enough, we have learned that our son will gradually lose his vision. This is a cruel, unfair disease. We need to find a cure. I will stop at nothing as his mother to raise awareness about Usher Syndrome type 1F so that no other family has to face this unimaginably difficult diagnosis.
