Samuel

How did you feel when your child was first diagnosed?

I felt so much sadness. I felt like I let him down.

What does your KdVS individual love the most?

Dinosaurs! Anything Animals!

How does KdVS affect your child?

You would never know. He doesn’t let anything stop him! He is like the light! He brings so much happiness and joy.

How has KdVS affected your entire family?

He has always been a fighter since birth. We treat him the same. We just are trying to learn how to help him better.

What is the hardest part about having KdVS?

The not knowing the future. He has had 1,000 of hours of therapies.

What is the hardest part about being a KdVS parent?

There aren’t words to describe. How much I wish I could help or take away to help him.

What would you tell newly diagnosed parents about KdVS?

Their diagnoses don't define them! They are still them. They are fighters and they got this.

What would you tell doctors, teachers and therapists about KdVS individuals?

If you just take the time. You can see their light.

Why are you asking people to donate to the KdVS Foundation?

Every KdVS infant, child, teenager and adult deserves to be heard. And have help! There is still so much to learn.