Mavryck Strong-Mavs Journey with Cerebral ALD

17/03/2026

Checked in and getting settled, ready for a very busy day tomorrow.

First up is sedation and surgery clinic, then trauma eye clinic, followed by labs and hematology/oncology. It’s going to be a long day with a lot of appointments back to back, and if we’re honest… these days are always a little stressful.

But if there’s one thing we know, it’s that we’ve never met a stronger boy. Mr. continues to push through things no child should ever have to face, and he does it with so much courage. Watching him handle everything the way he does reminds us every single day just how resilient he truly is.

Please keep him in your prayers tonight and tomorrow. Pray that everything goes smoothly, that sedation is easy on his little body, and that his labs come back looking good. Every appointment, every test, every step forward means so much to us.

We are so incredibly thankful for the love, prayers, messages, and support from all of you. Truly. The support from Mav’s Army and everyone following along has carried us through some of the hardest days. Knowing we’re not walking this road alone means more than we could ever say.

MavStrong.org

14/03/2026

How cute is this little bomber fan, win or loose we love our Bombers! 💙

12/03/2026

180 days. 🤍

Wow… it still feels unreal to say that out loud. We are thankful more than words could ever express.

Our boy is the strongest there is. He has been through more than most people will ever know, and he keeps pushing forward with the biggest smile.

180 days ago, his hero — his sister — helped save his life. Her love and bravery gave him the chance to keep fighting.

Yesterday was clinic day.
20 vials of labs, ECG, echocardiogram, and we started weaning some of his medications. So far, everything from the tests is looking good. The only issue was a little dehydration, but that was taken care of after his infusion.

And today?
He had school and absolutely loved it. Just a happy little trooper taking on the world one day at a time.

We are so grateful for every prayer, every message, and every person who continues to stand with Mav’s Army. 💙

09/03/2026

Tomorrow is a big day for us. We’ll head to Little Rock first thing in the morning for a long day of tests and appointments.

Mav has an ECG, echocardiogram, transfusions, and his usual weekly labs. It will be a full day of checking on how his body is doing and making sure everything is staying on track.

Tomorrow is also a big step in his recovery because we start weaning some of his medications. This is something we’ve been working toward, but it still comes with a lot of prayers and a little nervousness. Please pray that his body adjusts well and begins to stabilize on its own without these meds.

Watching our boy go through ALD is something we never imagined for our family. Some days are heavy, some days are hopeful, and most days are a little bit of both. Seeing your child face so much at such a young age just isn’t easy.

But through it all, we are incredibly grateful. Grateful for the doctors and nurses caring for him, grateful for every small victory, and grateful for the love, prayers, and encouragement from Mav’s Army. Your messages, prayers, and support mean more to us than we could ever put into words.

Many of you continue to ask how you can help. Between constant travel, medical care, and time away from work, this journey has brought a lot of unexpected expenses. If you feel led to support Mav and our family financially, we are incredibly thankful.
Cashapp- $MavryckStrong
Venmo-

Most of all, please keep Mav in your prayers tomorrow as we head into another long day and take this next step forward.

06/03/2026

It’s Friday!!

Labs this week were good, thank Jesus.

After the rollercoaster this journey has been, good labs never feel small. They feel like a deep breath we didn’t realize we were holding.

Buddy has been soaking up his foot spa treatments four times a day to help prevent infection in his toe, and he absolutely loves them. It’s the little things that bring him comfort right now.

This week he gets to start back to school and therapy, which feels like a big step toward normal again.

We’ll also begin weaning off some of his meds this week, so please pray his body adjusts the way it should and continues to stay strong.

We are so thankful for every good report and every step forward.

Please pray over our boy this is going to be a big week of changes.

If you’re able to help please do, if not please share so it can maybe reach the ones who can. Thank you guys for everything you do and continue to do for our boy.

Cashapp- $MavryckStrong
Venmo-
Mavstrong.org

03/03/2026

Tuesdays are for clinic and snuggling on big sis! 🫶

03/03/2026

Mavstrong.org

Our sweet, six-year-old nephew, Mavryck, was recently diagnos… Jordan Collins needs your support for Mav's Fight -Cerebral ALD- A Rare Childhood Brain Disease

03/03/2026

🌟 Mavryck’s Story 🌟

In April 2025, we noticed Mav was having hearing trouble and what we believed were silent seizures. At first, doctors suggested behavioral issues, but we knew something wasn’t right and continued pushing for answers.

After multiple opinions, extensive testing, labs, and an MRI, doctors initially told us MLD. Genetic testing was expedited, and within 72 hours of the MRI, we received the diagnosis that changed our lives forever.

Mav was diagnosed with Cerebral Adrenoleukodystrophy (cALD) and Addison’s disease (adrenal insufficiency).

Cerebral Adrenoleukodystrophy (cALD) is a rare, devastating genetic brain disease that steals a child’s abilities little by little. It attacks the brain’s white matter, destroying the protective coating around nerve cells that allows the brain to function. As the damage spreads, children begin to lose what they once did effortlessly—their vision, hearing, movement, speech, independence, and pieces of who they are. Skills fade. Bodies stop cooperating. Childhood is slowly taken away.There is no cure for cerebral ALD. The disease can move quickly and unpredictably, and every moment matters.

Addison’s disease means his adrenal glands cannot produce essential stress hormones, requiring lifelong medication and emergency care.

Since September, Mav has lost so much to this disease.
He can no longer play with his toys, has lost his vision, is fully dependent on his G-tube for nutrition, and has lost his independence and mobility. He has endured more than any child—or adult—ever should. No child should have to face this.

Things Mav still enjoys: 🤍
📖 Being read books
🧸 Fuzzy blankets
🌿 Bamboo clothing
🎧 Tonies characters
🥔 And occasionally… chips
🔗 https://www.amazon.com/registries/gl/guest-view/2HZ125EHRSG82?ref_=cm_sw_r_apin_ggr-subnav-share_W75YM0ZRJEA6X1VPDF1V&language=en-US

How you can help: Pray for our Mav. 🤍
• Gift cards: DoorDash, restaurants, Walmart
• Cash App- $MavryckStrong
• Venmo-
• GoFundMe- Mavstrong.org

Mav’s journey is far from over. There are still unknowns, ongoing treatments, constant monitoring, and hard decisions ahead. Every day requires careful planning, advocacy, and protecting his fragile health.

While so much has been taken from him, we continue to fight for his comfort, his quality of life, and every moment of joy we can give him. This road is long and heavy, but Mav does not walk it alone. We take it one appointment, one day, one step at a time, holding onto hope and faith through it all.

Thank you for loving and praying for Mav, supporting our family, and standing with us through every step, this has been far from easy.

02/03/2026

My names Mav and I don’t find a need for sleep 🤣🤣

28/02/2026

Today is Rare Disease Day. Spread the word share this post, and hug your unique babies extra today.

And while the world sees “rare,” we live it every single day.

Rare means 1 in 10 Americans are living with a rare disease.
Rare means there are over 7,000 rare diseases, most with little research and no cure.
Rare means families like ours fighting battles most people have never even heard of.

Mav has Cerebral Adrenoleukodystrophy (CALD) — a devastating, genetic brain disease that affects about 1 in 15,000–20,000 boys. It destroys the protective covering of the brain. It steals abilities. It changes everything.

He also has Addison’s disease, a rare adrenal disorder affecting about 1 in 100,000 people, meaning his body cannot produce the hormones needed to survive stress or illness. Without daily medication, it can become life-threatening.

These aren’t just statistics to us.
They’re hospital stays.
They’re MRIs and EEGs.
They’re medications around the clock.
They’re lost milestones.
They’re prayers whispered at 2am.

But here’s what else is true:

MAV IS STRONG.
Stronger than statistics.
Stronger than diagnoses.
Stronger than the word “rare.”

Rare doesn’t mean invisible.
Rare doesn’t mean less.
Rare means resilient.
Rare means fighters.
Rare means families who don’t quit.

Today we honor every child, every parent, every caregiver walking this road. If you’ve ever shared, prayed, donated, or stood beside us — you are part of this fight.





💙

If you have made it this far and want to help with money towards his care our Cash App and Venmo will be listed below. Please be cautious of scammers we have had some taking from our boy already. We are so appreciate of every $1 we have received. Just $1 or $5 goes so far as we battle these horrible diseases.

Cashapp-$MavryckStrong
Venmo-

25/02/2026

This boy has been so smiley the last few days, and we are her for it!!

All good news from clinic yesterday from labs, praise for this!

We finally got meds figured out to be therapeutic for him and this boys happiness has made us so ecstatic!

23/02/2026

How someone feels about his first complex care visit today 😭💙🫶

Mavstrong.org