Joe’s Story

By: Kelly, Parent Joe, an 11 year old with a 16p11.2 Deletion

“Let your child be your hero. Raising my son has made me a better person than I ever thought I could be.”

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

His relationship with his younger sister is typical. They fight at times and get along at others. His older sister (who is older be almost two years to the day) considers him her undercover twin. She is fiercely protective and the two are best friends. She says she came first so she could get the world ready for him.

What does your family do for fun?

Visit museums, play video games together, go to theme parks, watch movies, and everything most families do.

Tell us about the biggest hardship your family faces.

Childcare. My husband and I do not go out because we do not have anyone we feel can be trusted with our son.

What about your child puts a smile on your face?

His courage and strength. He has overcome so many things and inspires me to be a better person. I went graduate school to study School Psychology and Applied Behavior Analysis because I was so inspired by him.

What motivates you to participate in research?

Growing the body of knowledge from which and I and others support and teach our children.

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

Let your child be your hero. Raising my son has made me a better person than I ever thought I could be.