Jacob

How did you feel when your child was first diagnosed?

Relieved to finally have his syndrome identified at age 18.

What does your KdVS individual love the most?

Movies/tv, music, sushi, the beach, our pups.

How does KdVS affect your child?

He’s basically healthy but ID and fine motor make life challenging.

How has KdVS affected your entire family?

My entire adult life has been spent advocating for his medical, academic and social needs.

What is the hardest part about having KdVS?

Knowing he can’t do many of the things that other 24 year olds can do.

What is the hardest part about being a KdVS parent?

Knowing my child will be dependent on me the rest of his life including after I’m gone. Battling the school district and state agencies.

What would you tell newly diagnosed parents about KdVS?

Just when you think your child will never do something, they will surprise you.

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

Raise your expectations.

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

So many of these children are so very sick. There but for the grace of god go I.