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Lea’s Story

I was born with combined hearing and vision loss. I struggled to swallow as a baby. I had many surgeries for various health emergencies. concerning my nose to open up to allow me to breathe, treatments to help me swallow without aspiration. I had have major surgeries for multiple sets of ear tubes. Growing up I was the shortest in my grade and I had trouble participating in sports due to getting tired easily and due to my poor vertebrae loss muscle tone. I just try to do my best and trust in my supports and most important Jesus.

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

That it isn’t a one size fits all everyone is unique and incredible.

The 2023 global theme for Rare Disease Day is “Health Equity.” What does equity in health mean to you?

Equity means everyone receives care based on there needs likewise care being accessible too.