Team Ryver: Crmo/cno Awareness

13/05/2026

Started our morning with a full on 4 year old crisis… we were out of applesauce 😅🍎 Ryver made sure to let Dr. Lauren know all about our “bad morning.” After physical therapy, we stopped to see Uncle J Adam Gray at Murray Ford of Starke and he saved the day by getting Ryver his applesauce 💙

Watching this video fills our heart in ways we can’t even explain. Just a few months ago, Ryver was struggling too walk, run, and jump because of CRMO. Today, he’s jumping and showing us just how strong and resilient he is. We still have a long road ahead, but God has carried us this far and I truly believe Ryver’s story is going to become a powerful testimony someday.

Please keep Ryver in your prayers as we start his new medication this weekend. We’re praying for no side effects, healing in his body, and that we can successfully taper him off steroids. Thank you all for loving, supporting, and praying for our sweet boy through this journey 💜🙏

We are 💙

06/05/2026

We love seeing this community come together to raise awareness and support our CRMO warriors. Can’t wait for this year’s 5K!

We have a WINNER!!!

We are excited to share this year's CRMO Awareness 5K logo, which was designed by CRMO Warrior and Advocate, Lauren. Lauren has shared her talents with this community over the years, and we feel so honored to have her design as this year’s 5K logo. Congratulations, Lauren! We will soon share a mock-up of this year's event shirts with her amazing logo. And we are excited to bring the worldwide CRMO community together to show support and spread awareness throughout the month of October, which is CRMO Awareness Month! More information on the 5K will be shared soon.

Our Kaila's Komfort Board selected the winning logo this year, which was not an easy task because we had so many awesome designs to choose from (we will be sharing those separately so you can see the talent we have in our group)! Thank you to everyone that took the time to design a logo!!

05/05/2026

Thank you Taylor-Made Tees & More 💜💙

Shirts we completed for a family who are near and dear to our hearts!!!
💜

04/05/2026

Today was a big day for Ryver- he had his very first physical therapy appointment, and it went really well! 💪

Dr. Lauren was amazing with him. The plan is to have him come back once a week for an hour to focus on building strength in his lower body and improving his overall stability and mobility.

Ryver said he’s “a wittle sore”, but still wants to go back- which feels like a big win. We’re so proud of him for pushing through and staying positive.

Thank you all for continuing to support Team Ryver 💙

21/04/2026

Hi everyone- just wanted to share an update on Ryver and continue spreading awareness for CRMO/CNO.

When we tried lowering his steroid, his pain and inflammation came back, so his doctor increased it back to 6 mLs for now. NSAIDs alone just aren’t enough to manage things right now.

Our next step is deciding between two medications: Methotrexate or Humira.

Methotrexate is a medication that helps calm the immune system and reduce inflammation. It’s been around a long time and is often used as a first step beyond NSAIDs.

Humira is a biologic medication that targets a specific part of the immune system (TNF) and can be more aggressive in controlling inflammation.

Both options come with their own pros, cons, and risks, so we’re taking some time to learn more and figure out what’s best for Ryver.

The overall plan will likely be at least a year of treatment, with hopes of trying to taper the steroid again in about 3 months. He’ll also be starting physical therapy to help rebuild his strength.

CRMO/CNO isn’t a one size fits all condition, and decisions like this can feel really big. If you can, please keep Ryver in your thoughts and prayers as we navigate this.

Thank you all so much for the continued love, support, and for helping us raise awareness 💙

17/04/2026

Quick update on Ryver 💙

He’s been having a tougher few days with pain, but we’re really thankful for Dr. Rammel and the UF Health Rheumatology team for getting back to us so fast and helping us get him some relief.

It’s hard seeing him hurt, but he keeps pushing through like a little champ.

Praying for some easier days ahead for him and all the other CRMO Warriors 💜

14/04/2026

💙 Team Ryver: Progress Update and What’s Next 💙

It’s been a little while since our last update, and we’re thankful to share some progress, though the journey is still ongoing.

Since starting his steroid treatment, Ryver’s appetite is back, and he’s feeling much better in that regard. He’s eating more and has regained some energy, which has been such a relief. It’s been wonderful to see him feeling more like himself.

What We’ve Seen:
💙 Pain and Swelling: Ryver is still experiencing pain and swollen joints, but the pain is much less intense than it was a month ago. While it’s still present, it’s not nearly as severe, and we’re hopeful that with continued treatment, the pain will continue to improve.

💙 Lesions: The MRI showed osteomyelitis lesions in several areas: his right foot (mid-foot cuboid bone), right humerus, and right femur. These lesions are part of the inflammation caused by CRMO, and they’re being monitored closely.

💙 Anemia: Ryver’s iron-deficiency anemia continues to be monitored. We’ve added liquid iron supplementation, which should help with his energy levels, especially as the inflammation continues to be treated.

Looking Ahead:
Ryver’s next check-up is on April 21st, and we’ll be closely reviewing his progress. While the steroids have helped, the pain and swelling still need further management. We’ll begin NSAIDs once we taper off the steroids, and this may help better control pain and inflammation over time. If the pain continues to be problematic, we’ll discuss immunosuppressive therapy options like methotrexate or Humira.

Immunosuppressive therapy will be an important step to help manage the inflammation long-term and prevent more lesions from forming. Our goal is to get Ryver’s pain under control and improve his quality of life.

Physical Therapy:
Once Ryver’s pain is under better control, we’ll start thinking about physical therapy to help with any lasting effects on his mobility or strength. This will be an important part of his recovery to ensure that he’s moving freely and safely again.

How You Can Help:
💙 Spread Awareness: We continue to be so grateful for everyone sharing Ryver’s story and raising awareness about CRMO. Every share and conversation counts.

💙 Trust Your Instincts: If your child is experiencing unexplained pain, fatigue, or swelling, don’t hesitate to push for answers.

💙 Thank You: Your ongoing support and love mean the world to us. We’re so thankful for this incredible community that continues to lift us up.

Ryver is incredibly strong, and even on the hard days, he shows us what true resilience looks like. We’re so proud of him. We’ll keep you updated after his April 21st appointment. Please keep us in your thoughts and prayers as we take the next steps on this journey. 💙

09/04/2026

We are so excited to share this 💙

This year marks 10 years of spreading awareness, strength, and hope for CRMO- and Team Ryver is honored to be part of it.

From one story… to thousands. Every single one matters.

If you’re a creative soul, we’d love to see you bring this year’s theme to life-submit a logo and be part of something truly special. 🎨

Let’s keep raising awareness, supporting our warriors, and making noise together.

It’s official! We have reached a decade of our worldwide, uniting annual CRMO Awareness 5K!! It will once again be coming your way this October, with this year’s theme being “From One Story to Thousands: A Decade of Awareness”! 📖

🎨 We're once again calling all CRMO Warrior Artists: we’re inviting YOU to design this year’s most special and official 5K logo for the decade-old walk! 🌟 The winning design will be used on all event promotional materials and printed on our event shirts (giving you proper credit). All design ideas must be print-ready, use no more than 3 colors, be gender-neutral, and be appropriate for all ages. Theme: “From One Story to Thousands: A Decade of Awareness” 📦 Submissions must be print-ready📅 Deadline: FRIDAY, MAY 1. Please send your submission to kailaskomfort@gmail.com. The winner’s design will be on this year’s event shirts, all messaging and advertisements, and you will receive some fun prizes!

More details to follow on the dates and registration for the walk, but we are just so excited to bring this walk your way and want to start with the most exciting part, the visuals! If there are any questions, please email us at kailaskomfort@gmail.com

09/04/2026

💜 CRMO Myths vs. Facts 💜
Because so many people have never heard of CRMO/CNO, there are a lot of misunderstandings.

Let’s clear a few up 👇
❌ MYTH: “It’s just growing pains.”
💙 FACT: CRMO is an autoimmune disease that causes real inflammation in the bones- not something kids just “grow out of.”

❌ MYTH: “But he looks fine…”
💙 FACT: CRMO is an invisible illness. Pain and fatigue aren’t always something you can see.

❌ MYTH: “It’s probably just an injury.”
💙 FACT: CRMO can cause recurring pain in different areas of the body, even without any injury.

❌ MYTH: “Kids bounce back quickly.”
💙 FACT: Some days are okay- but flares can be intense, unpredictable, and exhausting.

❌ MYTH: “It’s rare, so it’s unlikely.”
💙 FACT: It is rare- but that’s exactly why awareness matters. So kids like Ryver don’t go so long without answers.

The more people understand CRMO, the better we can support kids who are living with it every day 💙💜

06/04/2026

💙 This Is What Strength Looks Like 💙

In this video, Ryver is struggling to walk. Every step is hard. Every movement takes effort.

This isn’t just a “bad day”. This is what CRMO/CNO can look like.

A disease that causes pain in his bones… in a body that’s still growing.
And yet- he keeps going.

As a parent, it’s incredibly hard to watch. You want to scoop him up, take the pain away, make it all better.

But he shows us every day what true strength looks like.
💙 Pushing through the pain
💙 Not giving up
💙 Still trying, even when it hurts

Not everyone sees what’s behind the struggle- but this is real. This is CRMO.

💙 Please help us raise awareness
💙 Share Ryver’s story

03/04/2026

💙 What is CRMO/CNO? 💙
Since many people have never heard of it (we hadn’t either), we wanted to share a little more about the condition Ryver is facing.

CRMO/CNO stands for Chronic Recurrent Multifocal Osteomyelitis.

In simple terms:
👉 It’s an autoimmune disease
👉 The body mistakenly attacks its own bones
👉 It causes inflammation, pain, and bone lesions
👉 Symptoms can come and go (often called “flares”)
👉 It’s rare and frequently misdiagnosed

For kids like Ryver, this can mean daily pain, extreme fatigue, and challenges that aren’t always visible to others.

The hardest part? Many families go months, or even years, without answers.

The more people who learn about CRMO/CNO, the better chance kids can be diagnosed earlier and get the care they need.

💙 Please share to help us spread awareness
💙 And trust your instincts- if something feels wrong, keep pushing for answers