Home > For Families > Get Support > Rare Disease Day > Erika’s Story

Erika’s Story

Erika is 27 years, We found out she had CHARGE within a few days. She spent 1st 5 months of life in the NICU. She has had over 60 surgeries and is Super Warrior.

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

Do not let anything get in your way. The word “No” should no exist. You can and You will.

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

There should be no limit to your abilities.