Alyssa’s Story

Hello my name is Alyssa. I am 33 year old and from Vero Beach, Florida. I was born with CHARGE syndrome and back in 1987 when I was born I couldn’t breathe. My doctor couldn’t figure out why I turned blue, finally realizing I could not breathe out of my nose. I could not drink. I had a tube down my throat until a year later in 1988. I started drinking milk in baby bottle and got better. In 1992 I was 6 years old and had a kidney surgery, and in 1993, at 7, I had a few nose surgeries, and in 1994, at 9, I had an ear surgery. I have had no more surgeries ever since then. I’m very healthy and I have a speech impediment. It is very hard with hardly anyone understanding me, even taking time to understand me better. It got better as I got older. I have some hearing loss in one of my ears and I wear glasses. One of my eyes are far-sighted and one is near-sighted. I’m very active. I always like entertaining and doing something all the time. I’m the only one [I know] in Florida that has CHARGE syndrome and I have always wanted to have friends from Florida with CHARGE syndrome 🙂.  I’m very nice, fun, caring, kind, thoughtful, very friendly, outgoing, and just down to earth, and truthful. I am very strong and I never give up. Nothing can hold me back. I’m proud be different no matter what 🙂