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Vivian’s Story

Photo of teenage girl in glasses wearing a shirt with a zebra on it that says Care About Rare - CHARGE syndrome. I have bilateral hearing loss (I wear hearing aids), a retinal coloboma in my left eye, and Tetralogy of Fallot, as well as balance problems and less of a sense of smell than most people. I was born with unilateral choanal atresia, which was fixed when I was 1, and I have had 2 heart surgeries-one at 4 months, and one at 10 years. I am a sophomore in high school, and I love reading, writing, daydreaming, cooking, baking, and researching medical conditions.

What would you like to tell other people about CHARGE syndrome?

It inspires me to be an advocate for social justice.