Mavryck Strong-Mavs Journey with Cerebral ALD

Mavryck Strong-Mavs Journey with Cerebral ALD Mavryck was diagnosed with Cerebral X-linked Adrenoleukodystrophy (cALD), a rare, devestating, genetic brain disease. Mavstrong.org

Can anyone take a guess who slept good being home last night?!
06/16/2026

Can anyone take a guess who slept good being home last night?!

My sweetest little love bug 💙
06/15/2026

My sweetest little love bug 💙

We’re still at ACH, but we had a much better night last night with only a couple episodes of pain. He is resting good no...
06/14/2026

We’re still at ACH, but we had a much better night last night with only a couple episodes of pain. He is resting good now. We’re still working on getting some of his labs back where they need to be, so he’s having infusions to help correct those. Thankfully, he’s looking so much better than he was when we first got here, and we’re so grateful for that progress. We’re still working on insurance approvals for the meds he needs for home. Sissy is leaving for Alabama tonight and dads headed to Kentucky for work so it’s just Mav and Mom for awhile.

Many of you have reached out asking how you can help. If you’d like to help with travel, food, medication expenses, and Mav’s ongoing care, you can do so here: Cashapp: $MavryckStrong
Venmo:
https://www.amazon.com/registries/gl/guest-view/2HZ125EHRSG82?ref_=cm_sw_r_apin_ggr-subnav-share_GZCPVV8N51NH7FZ4Q748&language=en-US
Please know how incredibly grateful we are for every prayer, message, share, and donation. These hospital stays add up quickly, and your support means more than we can put into words.

Most of all, please continue praying for Mav. Pray for healing, comfort, answers, and for him to keep moving in the right direction. We appreciate each and every one of you.

💙🩵
06/14/2026

💙🩵

It’s been a long day. Mav has been in a lot of pain, but we’re finally starting to get it under better control. We hardl...
06/13/2026

It’s been a long day. Mav has been in a lot of pain, but we’re finally starting to get it under better control. We hardly slept at all last night because he was inconsolable. Since he can’t communicate with us, crying is often the only way he can tell us something is wrong. Not being able to know exactly where or how badly he hurts is one of the hardest parts.

We got confirmation today that the infection is back, unfortunately, so it looks like we’ll be staying awhile longer. I know this is where he needs to be, but it’s hard missing out on things back home, especially for Vera. She has been such a trooper through all of this, and I’m so proud of her.

Mav also had his IVIG infusion today and, so far, he’s done really well with it. This is the new infusion we’ll be starting at home to help support his immune system and hopefully keep some of these infections away. It’s very expensive, so they’re working through what insurance will cover, but if it helps him, we’ll do whatever we can.

He’s also retaining a lot of fluid again this admission, which is something the team is watching closely. His labs are all over the place right now too, so we’re still trying to get things stabilized and figure out exactly what direction everything is headed. It feels like every time we get one thing under control, something else decides to act up.

We’re praying these medications start doing their job, the infection clears, and that Mav begins feeling more like himself again. Thank you all for the continued prayers, messages, calls, and support. We appreciate every one of them more than you know.

Our little Sugga Boog likes to keep us on our toes.We ended up at Baxter last night and were transferred to Children’s i...
06/11/2026

Our little Sugga Boog likes to keep us on our toes.

We ended up at Baxter last night and were transferred to Children’s in Little Rock by ambulance around 4:30 this morning. The EMTs were absolutely amazing the entire time. I wish we had met them under different circumstances, but they were so good with Mav and took great care of him.

We got to the ER at children’s around 7:30 this morning and have spent the day running tests and trying to figure out why he started running a fever last night. We finally made it to our admit room around 4 this afternoon, and he’s resting for now.

We’ve also been discussing starting a new IV medication at home to hopefully help prevent some of these fevers and infections that keep sending us back to the hospital. We’re hopeful it may help keep him healthier and out of the hospital.

It’s been a very long night and an even longer day. We’d appreciate all the prayers for answers, for this new plan to help, and most of all for our sweet boy to start feeling better.

Please share this and help us spread awareness about X-linked adrenoleukodystrophy so more families across the country k...
06/07/2026

Please share this and help us spread awareness about X-linked adrenoleukodystrophy so more families across the country know the signs and symptoms.

Most states now include ALD on newborn screening panels, which can help catch it early before severe symptoms begin. Unfortunately, our state didn’t start newborn screening for ALD until a few years after sweet Mavryck was born.

Early diagnosis can truly make all the difference.

This disease sneaks up silently and takes everything from these babies, usually without many warning signs before it’s too late.

On July 1st, 2025, sweet Mavryck was diagnosed with X-linked adrenoleukodystrophy. His only symptoms at the time were some hearing problems and staring spells. Come to find out, he was already in the advanced stages without any of us even realizing it.

We were told Mavryck only had 18–24 months, that MRI scan was lit up like Christmas lights.

X-linked adrenoleukodystrophy is a rare genetic disease that damages the brain, spinal cord, nerves, and adrenal glands. It happens because the body cannot properly break down certain fats called very long-chain fatty acids (VLCFAs). These fats build up and damage the protective covering around nerves (myelin).

ALD is caused by a change in the ABCD1 gene and is usually inherited through the X chromosome. It mostly affects boys, though girls/women can sometimes develop symptoms later in life.

There are different forms of ALD, but the most severe childhood form is cerebral ALD (cALD), where inflammation attacks the brain. This can cause:

* Behavior and personality changes
* Vision and hearing loss
* Trouble walking or talking
* Seizures
* Loss of skills over time

Many children with ALD also develop adrenal insufficiency (Addison’s disease), where the adrenal glands do not make enough hormones needed for blood pressure, stress response, and energy.

Doctors diagnose ALD with:

* Blood tests for VLCFA levels
* Genetic testing
* MRI scans of the brain

There is currently no complete cure, but treatments like stem cell transplant or gene therapy may slow or stop brain disease if caught early.

If you want to read more about our story please follow our page Mavryck Strong-Mavs Journey with Cerebral ALD or you can read more at Mavstrong.org .

Tuesday we had clinic and it went great! We had our infusion, went down on some meds, and were able to come off a few to...
06/05/2026

Tuesday we had clinic and it went great! We had our infusion, went down on some meds, and were able to come off a few too. He’s doing good, so please pray this continues.

Last night Vera asked me if next month, since it’s the month we officially got his diagnosis, if he would finally be back to his normal self. That question broke me. She misses her best friend. She misses playing with him, pestering him, laughing with him, and doing everything together like they used to. She misses her brother being able to talk, play, see, and just be a kid without a care in the world.

I think sometimes people forget this journey hasn’t just changed Mav’s life, it’s changed ours too. She’s loved him through every single part of this, and even as a child herself, she carries so much heartbreak no kid should. Thank you guys for continuing to pray for our boy and our family through this journey.

We’re at clinic in Little Rock this morning and how sweet these two are, please pray for good labs. 💙I don’t think she’l...
06/02/2026

We’re at clinic in Little Rock this morning and how sweet these two are, please pray for good labs. 💙
I don’t think she’ll ever grow out of matching with her brother.

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