Anonymous Story #3

By: Kristen, Parent of a child with a rare genetic change

What does your family do for fun?

Hike, swim, beach, and parks.

Tell us about the biggest hardship your family faces.

Trying to get our son to walk.

What about your child puts a smile on your face?

His fun personality!

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

I don’t know anything. I just found last week.

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

Pray and trust in Jesus.

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

Why can’t we fix the gene