Kayven’s Helping Hands

10/30/2026

We hit a milestone today! 💜

Today, we delivered 50 more Kayven’s Care Kits to Children’s Mercy Hospital in Kansas City, along with our first Plucky Duckys!

With this delivery, Kayven’s Helping Hands has officially donated 250 Care Kits to children across Kansas and all over the US.

Each kit is filled with comfort, activities, educational resources, and a little extra love for children and families navigating epilepsy.

As we prepare for the next generation of Kayven’s Care Kits, we are excited to continue growing this program and reaching even more children and families.

If you’d like to be part of helping us fill the next round of Care Kits, your support, whether through a donation, sharing our mission, or simply spreading the word, helps us bring a little more comfort and joy to children who need it most. 💜

Making Adventures Possible for All! 💜

10/28/2026

Who Are We at Kayven's Helping Hands?

We are families.

We are advocates.

We are volunteers.

We are parents who saw gaps in support and chose to help fill them.

What began as a way to honor Kayven's love for adventure, kindness, and reading has grown into a mission dedicated to helping children and families across Kansas. Everything we do is inspired by Kayven and the legacy he continues to create through acts of kindness and hope.

Through Kayven's Helping Hands, we have:

• Built and continue to maintain Little Free Libraries throughout our communities

• Given thousands of books to children, helping inspire a lifelong love of reading

• Helped families access camps, activities, and enrichment opportunities they may not otherwise have experienced

• Provided epilepsy education, awareness, and resources to families, schools, and the community

• Created and distributed more than 100 Kayven's Care Kits to children and families navigating seizures, medical testing, hospital stays, and new epilepsy diagnoses

• Partnered with schools, libraries, hospitals, and community organizations to expand our impact

• Hosted free family events that bring people together while making adventures possible for all

Most importantly, we have connected with families who simply needed someone to understand, someone to listen, and someone to remind them they are not alone.

Every donated book, sponsorship, volunteer hour, and event attendee helps us continue Kayven's legacy and reach even more children and families.

Thank you for believing in our mission.

Thank you for walking alongside us.

Thank you for helping us honor Kayven by creating hope, building community, and making adventures possible for all.

10/26/2026

What a great morning of BINGO!

A huge THANK YOU to everyone who came out Saturday to Chicken N Pickle - Wichita for our Seize the Day Bingo fundraiser benefiting the Epilepsy Foundation of Missouri and Kansas

Between the Bingo games, amazing raffle prizes, and all the wonderful people who showed up, it was a huge success! But more importantly, it was a morning of community, education, awareness, and support for families affected by epilepsy.

We were also honored to have the opportunity to speak about our efforts to bring Seizure Safe Schools legislation to Kansas. This legislation would help ensure school staff are properly trained to recognize and respond to seizures and that students with epilepsy have the support and safety measures they need at school. More than half of U.S. states have already passed some form of Seizure Safe Schools legislation. It's time for Kansas to join them.

We have a lot of work ahead of us, and we need your help!

If you believe every Kansas student deserves a seizure safe school, please take a minute to sign our petition (in the comments) and show your support.

Thank you again to everyone who attended, volunteered, donated, and helped make this event possible. A special shout out to the Derby HOSA Students that volunteered!

We are so grateful for the support of our community!

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.