DESCRIBER: A title: ŌMeet Ava.Ķ Ava stands in the street holding a basketball.
AVA: Hi, my name is Ava Bullis. I have Usher syndrome. That means I was born profoundly deaf and IÕm slowly losing my vision over time. At night I use a cane to help me see, and during the day my vision is limited. Just because IÕm losing my vision doesnÕt mean IÕm losing my ability!
DESCRIBER: She dribbles the ball and shoots a hoop.
JAMES BULLIS (AvaÕs Dad): She has a heart of gold; she takes care of everybody; she puts others before herself.
EMILY (AvaÕs Friend): SheÕs smart, popular, and she has both a tomboy and a girly-girl side.
JACOB (AvaÕs Friend): We were like, we were the meal. And she was the little spice that made that meal awesome and delicious.
MASON (AvaÕs Brother): SheÕs very special, and I help her a lot in the nighttime when she canÕt see.
MILEY (AvaÕs Sister): She has cochlear implants. SheÕs got devices on her ears. She canÕt hear when she takes her devices off, but she can hear if she puts her devices on.
CARLY FREDERICKS (AvaÕs Mom): Essentially sheÕs living two different lives. I mean, by day she does receive benefit from her cochlear implants, so she has access to spoken language. However, some people donÕt understand that that doesnÕt give her full hearing; itÕs not her natural hearing. Without those devices on, she is profoundly deaf. So there are some other ways of accessing communication that she needs. Sometimes she does need that prompting with sign language, or she needs to read your lips, or she needs the access of an FM system.
DESCRIBER: Carly and Ava sit on a bed facing each other in dim lighting. Carly signs to Ava using tactile sign language.
CARLY: With her compromised vision, it changes day to day. She could have a really, really good day and then she could have a really, really bad day. And itÕs hard, because people donÕt see the Ava at night. Once the sun sets, she turns into a different person. SheÕs tired from hearing through her devices all day, so she takes her devices off, so she has no access to hearing at that point. And once the sun goes down, her vision is completely gone, so she really has to adapt to her environment.
DESCRIBER: At night, Ava walks with her cane, accompanied by her grandparents.
CARLY: Even though itÕs our day to day, we donÕt live our lives feeling this is Ava with Usher syndrome and we have a deaf-blind child. ItÕs just Ava; itÕs who she is; weÕve embraced it; I couldnÕt imagine her any other way.
DESCRIBER: At Disney World, Ava dances with her grandfather. She walks toward the camera and strikes a pose.