By: Jenni, Parent of John, a 15 year old with a 16p11.2 duplication
“(We) want to be of assistance to help researchers learn more as well as hopefully understand more myself about my son’s condition.”
What is your child’s relationship like with his/her siblings?
Family of 5 kiddos, 2 with genetic disabilities. Lots of fun, love and support. Dad works, mom is homemaker.
What does your family do for fun?
Camping, holiday traditions, board/card games, football fans.
Tell us about the biggest hardship your family faces.
Our middle adopted son has 16p11.2 duplication. He struggles with a lot of mental health issues and is currently in a locked psychiatric hospital. He has been removed from 2 residential treatment facilities. He has processing issues along with ADHD, RAD, Social Pragmatic communication disorder, bipolar, ODD, DMDD.
What motivates you to participate in research?
(We) want to be of assistance to help researchers learn more as well as hopefully understand more myself about my son’s condition.
How do you feel you are helping Simons Searchlight learn more about rare genetic changes?
Just answer surveys when they ask.
What have you learned about your child’s condition from other families?
Nothing. Not much is known on this section of the gene.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Nothing, because I haven’t learned anything from the research.
What is one question you wish researchers could answer about your child’s genetic change?
What are typical behaviors seen?