Ryder

How did you feel when your child was first diagnosed?

Lost and not sure where to begin with the new information. Unfortunately, our experience at his diagnosis meeting was not great - the neurologist just looked up information on google and didn't provide us with any resources so we had to do a lot of research on our own in the beginning before finding the KdVS Foundation. We have since built a fantastic team for Ryder; all his therapists, doctors and specialists are amazing!

What does your KdVS individual love the most?

Ryder loves books, Paw Patrol, Disney Pixar's Cars, Bluey and Ms. Rachel

How does KdVS affect your child?

Ryder is speech delayed and non-verbal, he has hypotonia making physical activity a little more challenging and he has a hard time using his fingers for tasks like zipping, putting on shoes, using scissors and eating. While eating Ryder will grab handfuls of food vs pinching and picking up smaller pieces to chew so we are always making sure he's not choking.

How has KdVS affected your entire family?

We have embraced this journey of learning about Koolen de Vries and are grateful for the love and support of our family. Challenges we run into are communication barriers (Ryder knows sign language and is learning communication through his AAC device) and physical barriers (needs help with a lot of everyday tasks like getting dressed, learning potty training, and having a very high pain threshold so not letting us know when he gets hurt).

What is the hardest part about having KdVS?

All the doctor/therapy appointments and having to explain what KdVS is to everyone you come in contact with.

What is the hardest part about being a KdVS parent?

A couple things: First is feeling isolated. Second is the anxiety of not knowing what the future holds or when the next breakthrough is going to happen.

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

The main thing we kept getting told is "he looks normal" or "he acts normal" or "he's not that far behind". Those types of statements can feel like you're being brushed off because no one but folks in our community understand everything we go through to help our Kool kids progress and develop. Going to all the therapists and doctors appointments takes a toll on all of us and Ryder works very hard to make the progress he is making!

What would you tell newly diagnosed parents about KdVS?

Get your 'schpeel' down because you will repeat what KdVS is to everyone you come in contact with over and over and over :)

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

These are the Koolest people you will ever get the chance to know and help enrich their lives!

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

Help us bring awareness to KdVS, find cures and let our community be heard.