By: Patrice, Parent of Alyssa, a 15 year old with a CTNNB1 genetic change
“Our kids have amazing drive and amazing courage.”
What is your child’s relationship like with his/her siblings?
Good! Her older siblings adore her.
What does your family do for fun?
Play board games, travel and watch movies.
Tell us about the biggest hardship your family faces.
My child is isolated from peers.
What about your child puts a smile on your face?
Her laughter and her strength.
What motivates you to participate in research?
To understand her syndrome and to hopefully help her.
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 her growth in everything thing she does.
What have you learned about your child’s condition from other families?
That we share a lot of the same symptoms and the family with younger ones follow Alyssa’s growth.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
It will get better.
What is one question you wish researchers could answer about your child’s genetic change?
Can we strengthen their weakness from the syndrome?
Is there anything else you would like to share with other families?
Our kids have amazing drive and amazing courage.