By: Lisa, Parent of Braden, an 18 year old with a 16p11.2 Deletion
“We aren’t alone in this journey.”
What is your child’s relationship like with his/her siblings?
Most of the time it’s a typical relationship. They still argue and fight even though they are 6 years apart.
What does your family do for fun?
Camping, swimming, board games.
Tell us about the biggest hardship your family faces.
It’s really difficult that he looks normal. Often strangers just think he’s being rude, when he doesn’t respond.
What about your child puts a smile on your face?
He can be very helpful.
What motivates you to participate in research?
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)?
I think we are helping to fill in some of the gaps.
What have you learned about your child’s condition from other families?
I’ve learned new medications to try and that we aren’t alone in this journey.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
To take it one step at a time. Someone once told me, keep your expectations low. At the time, I thought how awful. I get it now and can fully enjoy the small accomplishments!
What is one question you wish researchers could answer about your child’s genetic change?
How to make things better.