By: Amanda, Parent of Theodore, a 3 year old with a 16p11.2 Deletion
“Embrace and love your child. Enjoy them. No one knows what the future holds. It’s ok to be scared.”
What is your child’s relationship like with his/her siblings?
What does your family do for fun?
We play games, connect 4, watch movies, read, go to the park. Go on vacations!
Tell us about the biggest hardship your family faces.
The hardest part was in the beginning when our son Theodore was diagnosed with Rubinstein Taybi Syndrome. He had a microdeletion in chromosome 16. We had no where to turn to for answers and at first didn’t know how to cope with his multitude of medical conditions.
What about your child puts a smile on your face?
His joy and love of life.
What motivates you to participate in research?
To find answers and share the answers with families going through it. To give comfort and understanding to those seeking.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Embrace and love your child. Enjoy them. No one knows what the future holds. It’s ok to be scared.