Braxton’s Story

By: Shannon, Parent of Braxton, a 14 year old with an ANKRD11 genetic change

“Patience and follow your own instincts and gut.”

What does your family do for fun?

Camping, movies and video games.

Tell us about the biggest hardship your family faces.

Behavior issues

What about your child puts a smile on your face?

His silly, goofy personality

What motivates you to participate in research?

To help find things that will better help my son and those like him.

How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?

I don’t know that I really impact anything. I’m just trying to learn everything I can.

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

A lot about behavior and physical issues.

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

Patience and follow your own instincts and gut.

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

What causes some of the behavior.