Carson

Age: 3

Parent's First Name(s): Taylor

Parent's Last Name(s): Marcus

Mutation or Deletion: Deletion

Diagnosis Date: 10/05/2020

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Some people get to meet their hero…. I am my hero

How did you feel when your child was first diagnosed?

I was scared, confused, I felt alone. I felt like I’d never be able to give him the life he deserved.

What does your KdVS individual love the most?

He loves people, he use to be so attached and was scared of everyone but now he just loves people.

How does KdVS affect your child?

He has a speech delay, low muscle tone, epilepsy, he had hip dysplasia.

How has KdVS affected your entire family?

It had made my family appreciate the little things more. Have more patience

What is the hardest part about having KdVS?

For Carson, having to try and navigate with other kids who don’t have the same learning speed or understanding.

What is the hardest part about being a KdVS parent?

Feeling like everyone treats him differently, watching people prejudge him.

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

That out children should be treated different, that they can’t do the same things other kids can.

What would you tell newly diagnosed parents about KdVS?

It’s okay to feel whatever feelings you have, no one can tell you that they aren’t valid. It will get better and you will get answers. This community is so involved and friendly to each other you never feel you can’t reach out to anyone.

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

Do not stop researching, finding ways to help these kids/adults. Test earlier so kids who find out later don’t have to.

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

I’m asking people to donate for research, for the awareness there are other kids with rare disease, to bring this to the attention of everyone.