Justin’s Story

By: Tina, Parent of Justin, a 35 year old with a genetic change

“Most of the conditions are delays and with extra help they will get there.”

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

They are very different children and no very close. KGBer is very quiet and reserved.

What does your family do for fun?

Our boys both played different sport but mostly baseball.

What about your child puts a smile on your face?

He has grown into a lovely young man with a family of his own

What motivates you to participate in research?

To help others and my grandson now who has been diagnosed this year.

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)?


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

As I didn’t find out til this year it answered all my worries as he was growing up.

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

Most of the conditions are delays and with extra help they will get there.

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

How my son got it when my husband and I don’t have it?