Kayven’s Helping Hands

10/22/2026

💜 **Kayven's Care Kits are here to remind families they are not alone.** 💜

When a child is facing seizures, epilepsy, EEG testing, or a hospital stay, it can be overwhelming for the entire family. That's why Kayven's Helping Hands created **Kayven's Care Kits**—to provide comfort, encouragement, education, and a few smiles during some of life's hardest moments.

Each Care Kit is filled with thoughtfully selected items, including comfort gifts, children's activities, epilepsy resources, seizure first aid information, and practical tools to help families navigate their journey.

Best of all, **Kayven's Care Kits are provided free of charge** thanks to the generosity of our donors and supporters.

If your child or someone you know could benefit from a Care Kit, we'd be honored to help.

👉 Request a Care Kit here: https://form.jotform.com/260704458424053

Want to help us continue this program? Your donations make it possible for us to provide these kits to more families when they need them most. Every gift helps us spread hope, one Care Kit at a time.

💜 Together, we're making adventures possible for all.

10/21/2026

This is not okay.

Children’s Mercy in Kansas City is the only Level 4 pediatric epilepsy center within about four hours of Wichita. A Level 4 center offers a higher level of specialized care than a general neurology clinic, with advanced testing and the ability explore treatment options for children whose seizures are hard to control or complex.

Around 30% of children with epilepsy continue to have seizures that aren’t controlled by medication.

Removing Children’s Mercy from ACA coverage could leave families with impossible choices: travel even farther, pay more, or go without care their child needs. Families already have enough to worry about. It’s already a challenge for families to access the epilepsy care they need. They shouldn’t have to worry about losing access to one of the closest places and for some, the only place that can help their child.

Please speak up and ask that Children’s Mercy remain covered through ACA plans. Kansas kids deserve access to the care they need.

We have learned that ACA Marketplace coverage will change effective on Jan. 1, 2027, and we know families have questions and concerns about what this may mean for their child’s coverage.

Children’s Mercy wants to participate in ACA Marketplace networks serving our area. However, the health plans have chosen not to include Children’s Mercy as an in-network provider. This was not a decision made by Children’s Mercy.

We encourage families to contact their insurer to understand their coverage and available options. Children’s Mercy will also help families with potential options for accessing care when their plan is out of network. Families with concerns about their insurance network may also contact the Kansas Department of Insurance or Missouri Department of Commerce and Insurance to advocate for better pediatric insurance coverage.

As a non-profit pediatric hospital, we will continue advocating for meaningful access to the specialized care children need.

10/21/2026

Losing a child is devastating, to say the least. For a long time, we were left confused about what happened, questioning everything and everyone. Why did this happen? Could we have done more? Why didn’t we know about SUDEP?

After countless ER visits, appointments, and specialist visits, why had no one talked to us about it?

About a year ago, we learned why. Many of them didn’t know either.

SUDEP isn’t widely taught, isn’t required knowledge for many providers, and often isn’t talked about. Although it is more common then SIDS. Realizing that has brought another level of heartbreak that’s hard to put into words.

Please read this letter. Please share it, and tag doctors and medical professionals who need to see it. Families deserve to have these conversations. This has to change.

10/21/2026

Today is .

More than 30 partners have come together to raise awareness, share resources and spark conversations about seizure safety and SUDEP. Every conversation is an opportunity to inform, empower and take action.
Together, we can make a difference. Join us. Share. Start a conversation. Help .

Learn more: https://hubs.li/Q04BTff50 & https://hubs.li/Q04BTfgW0

10/21/2026

New research tools may help unlock important clues
about SUDEP.

Researchers are developing a rabbit model of Dravet syndrome
to study changes in the brain, heart and breathing that may
occur before SUDEP with the hope of identifying new
opportunities for detection and prevention.

Research brings us closer to answers.
https://dravetfoundation.org/a-new-rabbit-model-could-unlock-cl
ues-about-sudep/

10/20/2026

Could technology help us respond faster after a
nighttime seizure?

New research is exploring a smart mattress designed to detect
when someone is face-down and reposition them onto their side
— an innovative approach that could someday contribute to
reducing nighttime SUDEP risk.

Read the study:
https://onlinelibrary.wiley.com/doi/10.1002/epi4.70329
Innovation brings hope.

10/20/2026

What can sleep teach us about SUDEP prevention?

New research found an association between sleep disorders
and higher SUDEP risk scores in people with epilepsy —
highlighting sleep as an important area for continued research.

Each new finding brings us closer to better understanding and
prevention.

Read the study:
https://onlinelibrary.wiley.com/doi/10.1002/epi.70318

10/20/2026

Collaboration can move us closer to a future without
SUDEP.

A new international research agenda brings together priorities
across research, clinical care, awareness and education —
creating a shared roadmap toward better understanding and
prevention.

Read the roadmap:
https://journals.sagepub.com/doi/10.1177/1535759726144239
1

10/20/2026

Benign. A word we heard far too often when it came to Kayven’s seizures.

Kayven’s seizures began when he was just 2½ years old. They were considered febrile seizures (with a fever/illness) and, as far as we knew, stopped around age 5. He wasn't diagnosed with epilepsy until he was 8, after his first unprovoked tonic clonic seizure.

The first time I read this study, my heart stopped. It hit so close to home.

There is still so much we don't understand about seizures, SUDEP, and sudden unexplained deaths in children. But one thing I know now is that no seizure should be dismissed as benign.

_____________________________

Research is helping us better understand why some
seizure-related deaths happen.

A recent study explored connections between febrile seizures,
sleep and sudden unexplained death in childhood (SUDC),
identifying possible differences in arousal that warrant further
study.

Every new insight brings us closer to better understanding and
prevention.

Read the study:
https://www.sciencedirect.com/science/article/pii/S08878994250
01705?via%3Dihub