Elena’s Story

By: Lauren, Parent of Elena, a 20 month old with a 1q21.1 Deletion

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

My daughter with 1q21.1 microdeletion doesn’t really interact with her older siblings. She is non verbal at the minute.

What does your family do for fun?

My girls love to go the the park or the soft play.

Tell us about the biggest hardship your family faces.

Not knowing much about this disorder.

What about your child puts a smile on your face?


What motivates you to participate in research?

To learn more

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

That the symptoms are so widespread