Kayci Capps
Herculaneum, MO
Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome?
William, an otherwise perfectly healthy baby, had his first seizure at 3 months old. After several hour-long seizures following this, we did genetic testing and discovered our sweet baby had a genetic condition known as Dravet Syndrome.
What are some of the biggest challenges you’ve faced as a caregiver?
Finding time for the rest of my family. Finding time to go out with my spouse and my typical children has been a huge challenge and I have had to reset what I thought my life would look like.
How has Dravet syndrome impacted you and your family's daily life and routine?
We never are all together. One of us is home with Will and the other is with the other children swimming, at birthday parties, and other things Will is unable to do. It is very hard to live a typical life with Dravet Syndrome even though we try our hardest.
What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?
To not take what everyone says as the law. Different drugs and procedures work differently for our kids and it will take some time to figure out what works for YOU.
Are there any specific resources, organizations, or individuals that have been particularly helpful to you?
Find your Dravet tribe!! I am part of the Dravet Tattoo Mamas and we always have SO much fun when we get together. It’s like coming home!
What moments or achievements have brought you hope and joy despite the challenges?
I passed Will’s Law in Missouri, making all school employees receive required seizure training.
How do you manage the stress and emotional strain that comes with caregiving?
I do yoga, run and go to the gym. Getting out of the house and taking care of yourself is something I wish I would have embraced a long time ago.
In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?
They have always been there for me through fundraising and resources as well as peer support. Couldn’t imagine this without them!
What message or piece of wisdom would you like to share with the broader Dravet syndrome community?
It gets better. It is constantly changing and new challenges are always approaching, but it gets easier in a different way.
Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?
We had families we didn’t even know come out to our Dravet walk to support our cause. It was so nice to connect with those families we didn’t even know and get to see our children play together.
