Andres’ Story

By: Juan Carlos, Parent of Andres, a 4 year old with a KMT5B genetic change

“…we need to be united and share, miracles happen and we can communicate our son’s progress…”

What is your family like?

We have a family of five. My older kids are older than Andres. He is currently four and a half years and he has a sister who is seventeen and a brother who is fifteen. We all love and try to give our best to Andres.

What do you do for fun?

Walk, swim, go to the movies.

Tell us about the biggest hardship you face.

We want to give Andres the ability to face his present and future. When you are in something not very common you feel lost sometimes and not really knowing if the things you are doing really are helping him.

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

To help my son and another’s to face this condition.

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

What’s the best we can do as parents to help them achieve the most?

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

None. We just learned about this gene.

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

That we need to be united and share, miracles happen and we can communicate our son’s progress and things that are helping.