Brynnon and Brett’s Story
By: Denise, Parent of Brynnon and Brett, 19 and 14 year olds with a genetic change
“Everyone has a story, and if we all share eventually our stories will fall together and provide answers. We realize that everyone is important!”
What is your child’s relationship like with his/her siblings?
Brynn and Brett get along well with their brothers and sisters.
What does your family do for fun?
We enjoy parks, movies and games!
Tell us about the biggest hardship your family faces.
The biggest hardship for us has been the lack of control of the seizures and of course the medical cost.
What about your child puts a smile on your face?
Brynn and Brett are such happy guys! Both are always willing to offer a hug and a pat to let you know your loved!
What motivates you to participate in research?
We hope eventually no parent will have to wait and question everything for years before they have an answer.
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)?
Everyone has a story, and if we all share eventually our stories will fall together and provide answers. We realize that everyone is important!
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Be patient while we wait for more answers!