Hayden’s Story

By: Emma, Parent of Hayden, a 5 year old with a 16p11.2 duplication

“Don’t give up without a fight and be prepared for people not understanding the condition.”

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

Very one sided at times but my daughter has learned to adapt to her brothers ways they are close in age which also helps but on the whole it is good.

What does your family do for fun?

Go to the park, or soft play, visit family members but mainly they like to watch videos on YouTube.

Tell us about the biggest hardship your family faces.

Being locked into the routines we have to follow because of Hayden’s autism and not fully being able to understand the chromosome change.

What about your child puts a smile on your face?


What motivates you to participate in research?

To gain more information and learn more about my son’s chromosome change.

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 feel I am impacting your understanding.

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

That there are many more things linked to the condition then we were first told

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

Don’t give up without a fight and be prepared for people not understanding the condition.

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

What behaviors are affected by the change.