Alysa’s Story

By: Darlene, Parent of Alysa, a 23 year old with a AHDC1 genetic change

What is your child’s relationship like with his/her siblings?

Loves her sibling. But can be stressful for sibling.

What does your family do for fun?


Tell us about the biggest hardship your family faces.

Aggressive behaviors.

What about your child puts a smile on your face?

Her smile.

What motivates you to participate in research?

Would like to learn what other family’s are doing to get through daily living and if they live with aggressive behaviors.

What is one question you wish researchers could answer about your child’s genetic change?

How to help someone with AHDC1 genetic

Is there anything else you would like to share with other families?

I know this is a rare genetic change and I would love to connect with other parents to exchange information.