NKH Crusaders

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NKH Crusaders

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NKH Crusaders, established in 2010, is committed to advancing research and supporting the people and caregivers affected by Nonketotic Hyperglycinemia, NKH.

We hope to bring awareness about NKH as well as raise funds for needed research. We need more treatment options.

11/05/2026

💙💛 Happy Birthday to our Founder and Executive Director, Kristin Archibald! 🎉🐝

For nearly two decades, Kristin has poured her heart into advancing NKH awareness, supporting families, and driving research toward better treatments and ultimately a cure. What began as a mission close to her heart has grown into a community of hope, connection, and action for families around the world.

From championing critical research and innovative projects to expanding family assistance programs, caregiver support, and educational resources, Kristin's dedication has helped shape NKH Crusaders into the organization it is today.

And through it all, even when life has presented challenges of her own, Kristin has continued to show up for this community with unwavering determination, compassion, and a heart for helping others.

Today, we hope she takes a moment to feel just how loved and appreciated she truly is. 💛

Kristin, you have spent so many years giving so much of yourself to others. Our birthday wish for you is that this next year brings you the same love, strength, comfort, and joy that you have worked so hard to bring to the families you serve.

From all of us at NKH Crusaders, Happy Birthday, Kristin! We hope today is filled with love, laughter, and a little well-deserved celebration! 🎂💙💛

Help us wish Kristin a very Happy Birthday in the comments! 🎉

11/04/2026

While we believe in more for our kids and try to be positive when we have so many children fighting for their life , sharing the reality of what these families and children are going through is not easy but brave.

Luka needs our prayers , his family needs our prayers and his medical teams need prayers for guidance as they help Luka.
We are praying Shannon Seymour
A message from his mom :

Luka had a high fever (103.5) and it didn’t break for over 12 plus hours. He required the cooling mat under him. During the fever, his limbs and body were freezing outwardly. The eye doctor came by today to check for pressure in his brain. We truly don’t know what’s happening. He also fell out of ketosis and we have changed the form of some of his medications being given. Neuro surgery also came by but they didn’t see anything on the mri that required them. They are having a big team meeting with Dr Van Hove from Colorado tomorrow. The attending did mention that for now, they can keep digging and managing Luka. But it isn’t off the table to transfer to another hospital, she did mention Colorado as a possibility. But this is all very hypothetical. I’d love to keep him at VCU but we are willing to do whatever he needs. This is a very serious situation and we are terrified we won’t bring our boy home. The longer that passes with no answers, the chances of bringing home our same boy get smaller. But we aren’t giving up hope.

I apologize for my lack of tone and feeling. I truly am terrified for our son and his life. I just wanted to update everyone who has been reaching out, praying and keeping my family in their thoughts. Thank you. I don’t have the emotional IQ to individually thank you all but it means the world to us. Please keep thinking of our Luka bear. This cannot be the end. We refuse to accept that.

11/03/2026

Another one of our warriors who has been inpatient over 50 days and fighting !

A update from his incredibly strong mama Lisha Cooper

Thaddeus had a much better day today... 🙌

Last night gave us quite a few scares with extremely low body temperature, low heart rate, and him being neurologically unstable. I really felt like he was oversedated, and after pulling back on some of his seizure medications, he looks so much better today!

He has started tolerating a little bit of feeds again! 🙌 We will slowly increase those as he comes down on his NIPPV. Right now, he is still needing quite a bit of respiratory support, breathing treatments, suctioning.

Our prayer is by tomorrow with some meds out of his system he will be more alert, and they can start weening down respiratory support.

Please keep praying for my sweet boy! 🙏

11/03/2026

Please keep praying , so many of our kids are struggling and fighting to live .

Update from Shannon Seymour on Luka :

Luka has begun having seizures. They are more intense than his typical ones. He spiked a fever of 103.5 this morning and has needed Tylenol around the clock. He randomly under breathes even the set rate that the ventilator is set at, not sure what that means. We went up on his oxygen to 30% last night. He still is not responsive to much but some pain response. Foley catheter was put back in today. More labs sent off but those take days on end to get back. Still no answers. Hopefully a call with the leading NKH doctor, all picu attending doctors and genetics tomorrow. That’s all I can manage for now to update. Keep my boy in your prayers please.

11/02/2026

💙💛💙NKH REMEMBRANCE DAY💙💛💙

Today is NKH Remembrance Day, a day created by NKH Crusaders to honor and remember all of our beautiful NKH warriors who are no longer with us.

We continue to fight because we want a future where no more families have to say goodbye to their precious children because of this devastating disease. We fight for better days, for hope, and for a world where NKH no longer steals our children.

For the families impacted by NKH, the loss of your child is remembered every single day. There is never a day when they aren't missed, loved, and carried in your hearts. But today, we want to come together as a community to speak their names, celebrate their lives, and make sure they are never forgotten.

If you feel comfortable, please share a picture and the name of your sweet child in the comments below. We would be honored to say their name, remember them, and include them in our prayers today.

Every child matters. Every name matters. Every life matters.

Though their time here was far too short, their impact is forever.

Today, we remember them. Today, we honor them. And tomorrow, we continue to fight in their memory.

Forever our NKH warriors. Never forgotten. Always loved. 💙💛💙

NKH Crusaders

11/01/2026

NKH Crusaders. Here is a way you can help us fund research and all the other programs. And maybe win 500.00

NEW RAFFLE

⭐️ **READY, SET, LET’S MAKE THIS HAPPEN\!** ⭐️

🎉 **OUR NEXT RAFFLE IS HERE — 5 WINNERS, $500 EACH\!** 🎉

That’s right\! We’re giving **5 lucky winners $500 CASH PRIZES\!** 💵🙌

🎟️ **Just $7.00 per spot!

But this raffle is about more than winning cash — it’s about making a difference\! ❤️

As we approach the end of the year, we have a **MATCHING FUND CAMPAIGN** underway, and we need YOUR help\! We don’t want to leave even $1.00 on the table\! Every spot purchased helps NKH Crusaders continue our mission and provide support throughout 2026. 💙

✨ What better way to support an amazing cause than to take a chance at winning one of FIVE $500 CASH PRIZES?\!

⭐️ **READY? SET? LET’S GO\!** ⭐️

Want in? It’s easy\!

Venmo: use ⭐️ 7.00 a spot 550 spots.

Excel sheet will be posted every evening with spots purchased in the last 24 hours.

Every spot counts. Every dollar matters. Every bit of support helps us keep our mission moving forward.

Let's make this our BIGGEST and BEST raffle yet, Share this post, spread the word, and help us reach our goal\! 🎉

THANK YOU for being part of the NKH Crusaders family\!** 💙⭐️

10/31/2026

NKH Crusaders. Let’s do our thing and offer support , positive thoughts and prayers to Luka and his family Shannon Seymour’s. Below is today’s update

Sodium benzoate toxicity is a real . Horrific fear and reality for our kids each time we give them them Sodium Benzoate .
The very fact it can take days to get a glycine level back to know if this is the cause , is unacceptable in 2026!

Luka update:

We finally received Luka’s glycine back. It was 53. Let me say that again, 53. Low. Way too low. He does best when his glycine is in the high 300’s. What we aren’t understanding is how it got that low. He is not on that high of a sodium benzoate dosage.

We are now holding his sodium benzoate doses for a bit. His team is in touch with the leading NKH doctor here in the country to decide next steps. It could mean dialysis, it could not. We aren’t truly sure what the next steps will be.

He is still sleepy, unresponsive and riding the vent. But the only positive I can see, is that now we have found the source of what is going on. He still needs your prayers. And so do I honestly.

My life is one long, tragic story and I’m feeling it heavily currently. Planning my sisters funeral while my son is fighting for his life wasn’t on my bingo card ever. 💔❤️

Address

Boston, MA

Telephone

781-249-1835

Website

http://www.nkhcrusaders.com/

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