The Allens’ Journey with 16p11.2 Duplication Syndrome

What do you do for fun?

We do so many different things for fun. Our family favorite is going on long road trips. Last year we traveled over 6,000 miles on different trips. We also enjoy a good game night whether that’s at home or going out in the community and going to an arcade, bowling etc.

Tell us about the biggest hardship you face.

My 17 year old son Brock was diagnosed with 16p11.2 duplication syndrome last year, but has had diagnoses of Autism, ADHD, Global Developmental Delay and Intellectual Disability since the age of 5, so there has been a few different hardships over the years. The biggest hardship we are currently facing is starting the transition to adulthood, and the unknown of what his future will be like for him.

What motivates you to participate in research? How has participating in research been helpful for you?

What motivates us to participate in research is everyone who has this genetic change, and those who aren’t even born yet who may also receive this diagnosis. So they can potentially have more answers than what we knew when Brock was little.

How do you feel you are helping Simons Searchlight learn more about rare genetic changes?

Yes, because although many people may share the same genetic changes, everyone is affected differently.

What have you learned about your or your child’s genetic condition from other families?

I haven’t had the chance to meet others within this community at this time.

If you could give one piece of advice to someone recently diagnosed with this genetic change, what would it be?

Take it one day at a time, and it’s ok to feel all of your emotions.