By: the Parent of Brandon, a child with a 16p11.2 Deletion
“Hang in there and be the support your child needs. Don’t underestimate them because they will surprise you at every turn”
What is your child’s relationship like with his/her siblings?
His siblings are a lot older then he is. Brandon is 3 years old, his sister is 12 and his brother is 16, but he adores his siblings
What does your family do for fun?
We went to Disney World over Christmas, we go swimming, we do family cook-outs. We don’t limit ourselves on fun
Tell us about the biggest hardship your family faces.
Not being able to understand what Brandon is trying to tell us because he is non-verbal.
What about your child puts a smile on your face?
How hard he tries and then when he finally understands something or can do something that he couldn’t before it makes me so happy
What motivates you to participate in research?
The idea that someone else might have an easier time or better understanding based on what we have gone through and tried.
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 don’t know how Brandon specifically is, I just know the more kids/people who are studied the more we can find out about 16p11.2-12.2 microdeletion
What have you learned about your child’s condition from other families?
a lot. I can’t even list it. It is mostly little things from behavior to teeth cavities
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Hang in there and be the support your child needs. Don’t underestimate them because they will surprise you at every turn
What is one question you wish researchers could answer about your child’s genetic change?
I don’t really have any. All my questions are along the lines of, “will my son ever talk or be able to live on his own?”