Kylian’s Story

By: Nathalie, Parent of Kylian, a 25 year old with a CASK genetic change

“Try everything, don’t put any limit on your child.”

What is your family like?

We are four: my husband, me, our daughter Morgane (30 years old) and our son Kylian (25 years old).

What do you do for fun?

(Go to the) museum, drawing, reading, hiking, go to music concert(s); travel.

Tell us about the biggest hardship you face.

I’m so alone managing everything for my son. He’s 25 years old and he’s at home [no school, no(t) (much) social interaction for him and me de facto]. I didn’t find good professional(s) for special program(s). I need someone to guide me.

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

(Can) you find a synthetic protein to replace the missing protein to make my son’s brain process normally?

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

I learned a lot during my son’s childhood from doctors, therapists and my own reading. At this time I didn’t know any other family (20 years ago).

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

Try everything, don’t put any limit on your child.