Cameron’s Story

By: Amy, Parent of Cameron, a 10 year old with a BCL11A genetic change

What is your family like?

Cameron is a special kiddo and is 10 years old. He has a 6 year old sister and baby sister on the way.

What do you do for fun?

We love to watch family movies, swim, spend time with cousins.

Tell us about the biggest hardship you face.

Not knowing what challenges Cameron will face in the future.

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

With so little information about this condition we feel it is important to use what we know and learn about Cameron to help other kids like him.

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

By sharing about Cameron’s life and experience.

What is one question you wish researchers could answer about this genetic change?

Are there an degenerative aspects? Should we expect any type of regression?