Erin’s Story

Erin’s family has shared with us their experience

“At just 12 months old, Erin had her first seizure.

We had no idea then just how much our lives were about to change. That moment was the beginning of a journey we could never have imagined.

The seizures continued, and at just 3 years old, Erin was diagnosed with STXBP1.

Erin is non-verbal and has significant global developmental delay. She faces challenges every single day that most of us will never truly understand.

But there is so much more to Erin than her diagnosis.

Erin is incredible.

She is brave when things are hard.
She is strong when her little body is tested.
She is resilient when life throws yet another challenge her way.

And somehow, through it all, she continues to amaze us.

Being Erin’s parents has taught us that strength doesn’t always look the way you expect it to. Sometimes strength is found in the smallest moments — a smile, a laugh, a look, a moment of connection, or simply getting through a difficult day.

We are endlessly proud of her.

STXBP1 is part of Erin’s story, but it will never be the whole story.

Erin is our beautiful girl. Our fighter. Our inspiration. And one of the strongest people we know. “