Hi! My name is Hunter Fox Harlan and I have Usher Syndrome 2A.
I know you’re thinking, what is that? The definition of ushers is: Usher Syndrome type 2A is a genetic condition characterized by hearing loss from birth and progressive vision loss that begins in adolescence or adulthood. The vision loss is due to retinitis pigmentosa. This is the exact information I received when I got the diagnosis.
My next question, is there a cure? There is no cure for Usher Syndrome. The best treatment is to identify the disorder as early as possible and begin educational programs and awareness right away. This helps reduce the communication and learning problems that can result from hearing and vision loss.
This past July I had the honor of attending the 11th annual Usher Syndrome Coalition Convention in Philadelphia. Shortly after during this experience I realized there was no awareness around this syndrome. I am only 17 months old, but I will devote my time and passion into finding a cure! At 17 months I enjoy spoken language and with my deaf coach I am learning ASL. I am happiest hanging out with my sister Bettie. I love to smile and I am very observant of others.
In this photo I am SMILING with my big brown eyes, I have long eyelashes and fair skin.
“I may be Hard of Hearing but I hear you,I may have vision impairment but I see you,I may look normal but I am Unique.”