Michael and Mickayla’s Story

By: Angela, Parent of Michael and Mickayla, 12 and 10 year olds with a 16p11.2 genetic change

“Just keep your head up.”

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

They get along great with each other.

What does your family do for fun?

Bowling, swimming, Special Olympics.

Tell us about the biggest hardship your family faces.

Medical.

What motivates you to participate in research?

To learn more.

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 part of the group.

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

That each person is same, but different.

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

Just because some things can happen doesn’t mean they will.

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

What does the long term look like?

Is there anything else you would like to share with other families?

Just keep your head up.