Jesse’s Story

By: Lisa, Parent of Jesse, a 6 year old with a 16p11.2 duplication

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

Crazy. They love/hate very quickly!!!

What does your family do for fun?

Swimming, movies, draw, play board games!!

Tell us about the biggest hardship your family faces.

Not know what all the genetic disorder includes. 16p 11.2 microduplication.

What about your child puts a smile on your face?

He’s funny, charming, and witty.

What motivates you to participate in research?

I want to help other family’s because we are in the dark.

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 hope to find similar things in common and be able to go the teachers and school and advocate for my sons or anyone else’s

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

So far not too much

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

Not to take it to seriously because the doctor didn’t seem that concerned

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

What does it actually affect?