Home > About the Foundation > Our Stories > Rare Disease Day > Jack’s Story

Jack’s Story

Jack was diagnosed with CHARGE syndrome after Doctors had pushed back on us for testing. It was not a surprise to us. We knew as his parents quickly after birth. Jack is a warrior and loves to shock us all meeting milestones and pushing boundaries we were told not to expect. He is our family’s blessing.

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

Don’t listen to the Doctors. Let your child show you all they are capable of.

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

Push back for what your CHARGER needs. You know them best. You are their best advocate.