Javan’s Story

By: John, Parent of Javan, a 17 year old with a 1q21.1 Deletion

“Enjoy the change, and enjoy each other”

What does your family do for fun?

Watch sci-fi/fantasy movies and tv shows, swim, read, walk, laugh

Tell us about the biggest hardship your family faces.


What about your child puts a smile on your face?

EVERYTHING, smile, funny, tender hearted, fun

What motivates you to participate in research?

To help anyone with a similar story

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)?

By being willing to give any and all information that may help someone else in any way to give their family the best opportunity to succeed in loving each other and being their best

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

Mainly that he is not alone

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

Enjoy the change, and enjoy each other

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

What to do to give him the best chance to succeed in school, college, job