NKH Crusaders

10/29/2026

❤️ When Life Feels Like a Storm, We Keep Fighting.** ❤️

What do you do when life feels like it’s raging all around you? When there is pain, sadness, and uncertainty, and you are desperately trying to hold steady and find the strength to keep moving forward?

For me, that strength began with **NKH Crusaders.**

I started NKH Crusaders during a time when every waking moment was filled with fear that I might lose my son. I carried guilt, questioned myself, and desperately needed hope. I needed a reason to get out of bed each day and show my boys that we were going to do everything we could to fight for better for all those impacted by NKH.

I was so naive in those early days. I thought all we needed was one researcher and some funding, and surely we would find answers.

I have learned so much since then. I have spent hours talking with doctors, researchers, and advisors, and while it is incredibly hard to watch our children struggle without the treatments they desperately need, we have made progress. We have dedicated researchers, multiple global organizations raising funds, and families who refuse to give up.

Today, with so many NKH children fighting for their lives in the PICU, my heart is heavy. 💔 My thoughts are with these children and their families who are holding on to hope one moment at a time.

We may not have all the answers, but NKH Crusaders is more committed than ever to fighting for our children.We will continue to advocate, support families, push research forward, and fight for treatments and a cure.

To everyone who keeps our families in your thoughts and prayers, shares our stories, donates, and supports our mission, THANK YOU. You have no idea how much it means to these families, and to me. ❤️

Today, I ask you to help us spread the word. Please share the NKH Crusaders page with your friends and family. Help us reach more families, medical students, future doctors, and researchers who may want to get involved.

You never know who might see a story, be moved to help, or become part of the answer we are searching for.

I cannot promise when the storm will calm, but I can promise this: NKH Crusaders will keep fighting. For our children, for our families, for those we have lost, and for every child who deserves a brighter future.

Please keep walking this road with us. Keep sharing. Keep believing in the power of what we can do together.

❤️ Hope isn't about pretending the storm isn't there. It's about choosing to keep fighting through it, together.

🌐 [www.nkhcrusaders.com](http://www.nkhcrusaders.com)

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10/28/2026

NKH Crusaders
Another difficult update from Thaddeus mom Lisha Cooper

Please , please offer words of encouragement , prayers ! We will take them all

Thaddeus had a significant desat overnight and had to be bagged, resulting in changes to his vent settings. We believe the extra medications needed for yesterday’s GI scope played a big part.

Neurology is working on weaning some medications and discussing decreasing his Versed with ICU.

His EoE visually looked better inflammation-wise, praise God! 🙌 Still waiting on biopsies. They also discovered a hiatal hernia, which is another thing we will have to keep close eye on.

Please keep praying for my boy. 🙏 We need his little body to recover and that breathing tube to come out as soon as safely possible. It's been one step forward and two steps back. But I choose to keep my trust in the man with the plan. And HE has not failed me yet!! 🙌🙌

10/28/2026

NKH Crusaders please read below and send love and prayers and positive words . NKH Is a beast !
Shannon Seymour
Luka Bear update:

I wish I had better news or any news.

Luka is now completely unresponsive and looks like he’s either in a coma or heavily medicated; he is neither.

They tried to wean his vent settings yesterday and get him back to his home vent settings. That lasted all of 5 minutes before they had to go back up. He has zero respiratory drive right now and is not even triggering the ventilator.

He had to have a Foley catheter put in yesterday. Since then, he has been peeing pink. They swear it’s due to irritation but I’m not certain.

He’s having low blood pressures instead of high like when we got here. All of the tests and such are coming back mostly clear or normal. We don’t understand what is happening. He is scheduled for a MRI sometime today.

Please, please pray for my baby. We are truly terrified. And if I’m being honest, after losing my sister yesterday; I am completely overwhelmed and at my breaking point.

Come on Luka bear. We love you so incredibly much baby.

10/27/2026

Help us to Honor our Warriors and order your 2027 Faces of NKH Wall Calendar, presented by Prime Time Sports, today! Sales end Saturday October 31st! Use the link below ⬇️

💙 The 2027 Faces of NKH Calendar, presented by Prime Time Sports and Framing is officially on sale! 💛

Meet the faces behind our mission.

The 2027 Faces of NKH: Honoring Our Warriors Calendar features children and individuals from our NKH community throughout the year—putting real faces to an ultra-rare disease that far too few people know about.

Every calendar purchased helps NKH Crusaders continue our mission to fund research toward better treatments, advanced medical technologies, and ultimately a cure for Nonketotic Hyperglycinemia (NKH), while supporting the families navigating this devastating disease.

📅 Calendars are $25 each.

Buy one for your home or office, give one to a teacher, friend, coworker, or family member, or purchase several as meaningful gifts for employees and clients this holiday season.

Most importantly, when you hang this calendar on your wall, you’re helping us tell their stories and introduce more people to the incredible warriors at the heart of everything we do.

💙 To the NKH families who participated, pre-ordered, and shared your children’s beautiful photos with us, THANK YOU!! Thank you for trusting us to share their faces, celebrate their lives, and honor their stories. This calendar would not exist without you.

Now, we’re asking our entire community of supporters to help us get these faces onto walls everywhere.

🛒 Order your 2027 Faces of NKH Calendar today:
https://nkhcrusaders.app.neoncrm.com/giftstore/product?id=7

💛 Honor their lives. Help us fight for their future. 💙

10/26/2026

NKH Crusaders
urgent update on Thaddeus From his mom Lisha Cooper

Thaddeus Update 🤍

Thaddeus had a decent night, but he has started spiking fevers again, which have continued throughout today. He was able to wean just a little on his ventilator settings, and he even woke up and looked at Mama for a bit. Those little moments mean everything... 🥹

We are still struggling with electrolyte issues and keeping him comfortable. When he woke up, he eventually became really agitated and needed medication to help him settle back down.

We have an incredible ICU doctor right now, Dr. Krishna, whose knowledge of medically complex children is such an asset to Thaddeus and his care.

This is going to be a very long road for my boy, and I ask that you continue praying for him.

And something I don't normally do is ask for prayers for myself. But today, I am. I'm angry. I'm hurt. And I want answers. I want to know how and why we got to this point, and more importantly, how we make sure it doesn't happen again while we are still here.

I have spent Thaddeus's entire life trying to protect him, advocating for him, giving him the absolute best life I can, and making sure he gets the best version of me. I don't want to carry anger in my heart, but right now I do. Because I truly believe so much of what brought us into the ICU for the third time could have been prevented.

I'm exhausted from having to fight so hard when all I want to do is be his mama.

So please pray for my boy's healing, but also pray for my heart. Pray that God gives me wisdom, discernment, patience, and the strength to keep advocating without allowing anger to consume me.

God knows my heart, and He knows how hard I'm trying. 🤍

10/26/2026

🎉🎂 Happy Birthday to our very own Chancee Culp!🎂🎉

Chancee is our incredible Director of Marketing for NKH Crusaders, but her role in our NKH community goes far beyond a title. 💙💛💙

She is a devoted mom to Lucas, a fierce supporter of our NKH families, and someone who gives so much of her heart, time, and energy to this community day in and day out.

Chancee, we are beyond grateful for all you do, all the love you pour into others, and the countless ways you show up for our NKH families. Your dedication, compassion, and heart make such a difference, and our community is better because of you. 💙💛💙

I hope you know just how deeply you are appreciated and how much you mean to so many of us. Today, we hope you feel surrounded by the same love, kindness, and support that you so freely give to others every single day.

Happy Birthday, Chancee!** May your day be filled with all the love you deserve and so much joy! 🥳💙💛💙🎂

With love and gratitude from your NKH Crusaders family! 💙💛💙

10/26/2026

NKH Crusaders
Words can never truly express what prayer means to a family sitting beside their critically ill child. 💙💛💙
Can you imagine 49 days at your child’s bedside? Can you imagine living every day with the fear that something as common as a cold or the flu could take your child’s life?
NKH is a beast all on its own, bringing so many complications and leaving us with so much still unknown. Add in a flu or even a simple cold, and the consequences can be devastating.
For these families, prayers are more than words. They are hope, strength, comfort, and a reminder that they are not facing this fight alone. 🙏💙💛💙
Please keep the prayers coming for Luka and Thaddeus. Here are the latest updates from their moms. Every prayer, every kind word, and every bit of support means more than you could ever imagine. 💙💛💙

Thaddeus : Lisha Cooper

Day 49...

There is beauty in brokenness. 🤍🙌

49 days of hospital walls, sleepless nights, unanswered questions, and watching my baby endure more than any child ever should. I'm exhausted!!! Mentally, physically, emotionally, and spiritually. I'm advocated out. Some days I don't even recognize the woman looking back at me in the mirror.

But when I look at this picture, I see something different.

I see a mama who is broken, but still standing. A woman who has cried more tears than anyone will ever know, yet still finds a reason to smile when her baby opens his eyes. 🥹 A woman who has questioned God, wrestled with His will, and still chooses to cling to His goodness.
I've learned that brokenness doesn't always mean weakness. Sometimes there is power in the breaking. There is beauty in a woman who has absolutely nothing left to give, yet somehow finds the strength to give a little more.

Maybe that's what GRACE looks like...✨️

I know the woman I used to be. I know where the Lord brought me from, and I know I was never deserving of the life, He so graciously gave me. Yet here I am, trusted with the sweet unique little boy who has taught me more about love, sacrifice, and faith than anything else in this world...🙌 I don't always like the road I'm walking. And some days, all I can offer Him is a broken heart and a whispered prayer. But even broken, I am still His.

And there is something beautiful and powerful about that.

LUKA: Shannon Seymour

Our Luka bear has had the day from hell and we cannot figure out what is going on.

Everyone but him had Covid two weeks ago. We thought he’d eventually get it. When I went into his room to get him up today, his sleeping heart rate was 135. I surely did not like that number. I bring him downstairs and get him some Tylenol. Before long his heart rate is in the 150’s-160’s. I keep waiting for the Tylenol to kick in. Then his heart rate is staying in the 170’s-180’s, while he’s just laying there sleeping. I throw oxygen on him because his oxygen was around 90. I hoped that maybe he was working a bit hard and this would balance the heart rate out.

It’s now been an hour of this heart rate, Tylenol isn’t working and he’s on 4 litres of oxygen (way different trached and vented than a nasal cannula 4 litres). I’m starting to slightly freak out. I go grab my brother and throw together a bag. I then called 911 and we took a life flight to the hospital.

Since being at the hospital, he is hypothermic (re**al temperature was 96.2), his heart rate is still very high, his blood pressures are VERY high, he’s sweating profusely yet freezing and all the viral panels came back clear; no covid or anything. In the helicopter, they had to switch him to their ventilator because he was not doing well on his. He’s on higher vent settings, pressure and needing oxygen. He’s now throwing up a bit too. He’s miserable and crying. My heart is broken for him.

We are worried, we are scared and we don’t understand what is happening. Our boy needs all of your thoughts, prayers, anything.

10/25/2026

NKH Crusaders
We need urgent prayers for another NKH warrior. Please pray for Luka and his family Shannon Seymour. He was life flighted to a nearby hospital and in the PICU.
This time of year and the next several months with all the flu and viruses is so hard on our kids and a cold or virus is just not a cold or virus it is life threatening for our kiddos .

Please pray !

10/25/2026

Keep those positive thoughts coming here is update on Thaddeus from his mama.

Thaddeus had a decent day today! ❤️

I want to again thank everyone for the prayers, we need them more than anything. Thaddeus has a special visit tomorrow. Please keep praying, this is going to take a lot of time for him. Pray for his healing, protection from any other sickness, and for his little body to get the rest it needs to heal...

Tell us what state you are praying from 💜