CHD8 Story #1

By: Cindy, Parent of a 9 year old with a CHD8 genetic change

“I am sharing information and changes that my child is experiencing to assist Simons Searchlight’s understanding of the gene changes.”

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

They have a 12 yr age difference but get along great! My child looks up to her sibling and has learned a lot in the short time they spend together.

What does your family do for fun?

Anything from water parks, and theme parks.

Tell us about the biggest hardship your family faces.

Finding a way to assist our child better academically.

What about your child puts a smile on your face?

Everything my child does makes me smile. My child has good heart, very kind and too sweet. She will make sure to make you feel loved. Also seeing her make progress and becoming more independent.

What motivates you to participate in research?

To be able to understand my child and the changes to expect. Find new research programs that can assist her as well.

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 am sharing information and changes that my child is experiencing to assist Simons Searchlight’s understanding of the gene changes.

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

That many share similar health and growing issues.

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

Research, and do everything you can to learn about this gene.

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

They have provided a lot of information and also update us with any changes.