By: Julie, Parent of Knoxx, a 19 month old with a 16p11.2 Deletion
“Stay strong and push the person you know with the deletion. Make them strive for their full potential.”
What is your child’s relationship like with his/her siblings?
They adore each other.
What does your family do for fun?
Tell us about the biggest hardship your family faces.
The constant therapy appointments and doctors appointments for Knoxx.
What about your child puts a smile on your face?
They fact that he loves life no matter what obstacle it hands him.
What motivates you to participate in research?
I want to know other families with the same issues and I want future parents to know what they will be facing.
What have you learned about your child’s condition from other families?
I’m not alone in this tiny boat.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Stay strong and push the person you know with the deletion. Make them strive for their full potential.
What is one question you wish researchers could answer about your child’s genetic change?
I still don’t understand why or how this happens.