Ashlynn’s Story

By: Laura, Parent of Ashlynn, a 9 year old with a BCL11A genetic change

“Connect with others who share a similar experience.”

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

Typical sibling squabbles but can also play really well together.

What does your family do for fun?

We love camping, hiking, swimming, and taking trips as a family.

Tell us about the biggest hardship your family faces.

Therapy appointments, time to fit everything in. Worrying about her just being a kid.

What about your child puts a smile on your face?

She is always happy. She always wants to work and learn. She tries her best. She is friendly and social, and loves talking to people.

What motivates you to participate in research?

I want to help other families and children so they can get the help they need early.

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

Very similar presentations.

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

Connect with others who share a similar experience.

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

What is her risk of developing, if any, later health problems?