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?