Skyler’s Story

By: Jennica, Parent of Skyler, a 12 year old with a FOXP1 genetic change

“This doesn’t define your child!”

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

Skyler and Kesler are close , Skyler loves to help out with his lil brother Kesler.

What does your family do for fun?

Skyler and Kesler enjoy horse back riding , and Skyler plays goalie for a hockey team.

Tell us about the biggest hardship your family faces.

The hardest part is juggling 2 kids with special needs. Finding the balance between working and juggling the kids appointments.

What about your child puts a smile on your face?

Their horses !! Both boys are smiling as long as they are out doors or being active.

What motivates you to participate in research?

Help others find answers so they don’t have to wait as long as we did to get a diagnosis!

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)?

Because each child presents differently each child you see helps you build a data base to better understand the mutation

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

We have learned we aren’t alone !!

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

This doesn’t define your child!!!!

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

Why it happened??