STXBP1 Family Story

By: Malin, Parent of a 36 year old with an STXBP1 genetic change

“Don’t give up.”

What is your child’s relationship like with his/her siblings?

He is grown up now He was interested but did not play with them

What does your family do for fun?

Listen to music, Picnics, See friends

Tell us about the biggest hardship your family faces.

He takes a LOT of attention. Difficult to do things that other families do

What about your child puts a smile on your face?

His happiness when he feels good

What motivates you to participate in research?

Help others with younger children

What have you learned about your child’s condition from other families?

He was just diagnosed at 36 years old

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

Don’t give up.

What is one question you wish researchers could answer about your child’s genetic change?

What is his future going to be like?