Luke

How did you feel when your child was first diagnosed?

Relieved. We were given many diagnoses beforehand but this one fit him exactly.

What does your KdVS individual love the most?

People.

How does KdVS affect your child?

His speech is affected most.

How has KdVS affected your entire family?

Because of the seizures, we were always worried about when the next one would be.

What is the hardest part about having KdVS?

Seizures.

What is the hardest part about being a KdVS parent?

The unknown.

What is the biggest misconception about being a KdVS parent or an individual with KdVS?

That it will make life so hard.

What would you tell newly diagnosed parents about KdVS?

It’s going to be ok. Your child will be so loving and will steal your heart.

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

Be patient.

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

For research.