By: Tracy, Parent of Katelyn, a 6 year old with an ANKRD11 genetic change
“Be the biggest advocate for your child. The journey is going to be hard but there will be lots of moments filled with joy, cherish them no matter how small. Be strong, we are all here to support you.”
What is your child’s relationship like with his/her siblings?
Better. She used to not engage with him at all. Now she watches him.
What does your family do for fun?
We love to be outdoors. And my daughter loves music.
Tell us about the biggest hardship your family faces.
Doing normal things. Like the grocery, eating out etc.
What about your child puts a smile on your face?
Her laughter, her smile and her cuddles!
What motivates you to participate in research?
My daughter. I want the best for her and the ability to help her in any way possible.
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)?
My daughter has two ultra rare mutations and the information available is very minimal.
What have you learned about your child’s condition from other families?
We all are different but similar.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
To be the biggest advocate for your child. The journey is going to be hard but there will be lots of moments filled with joy, cherish them no matter how small. Be strong, we are all here to support you.
What is one question you wish researchers could answer about your child’s genetic change?
I’ve rewritten this a few times, so many questions…What is the best way to help aid her in learning?