Mavryck Strong-Mavs Journey with Cerebral ALD

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Mavryck Strong-Mavs Journey with Cerebral ALD

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

05/30/2026

Sweetest boy is enjoying snuggles with his fav buddy, monkey. 🫶♥️

05/26/2026

Someone’s awake and hanging out with mom, pain is continuing to get better. Mav was in Adrenal Crisis Wednesday night and they think that is what is still effecting his labs. We’re praying they will stabilize in the coming days so we can get our boy back home.

Thank you guys for all the prayers for our sweet Mav. ❤️

05/24/2026

Starting to think Mav wants to stay just because he loves his nurses here. We’ve been here since Wednesday and right now we still don’t really have a game plan for going home because his labs just aren’t doing what we need them to do yet. Pain is getting a little better though, so we’re holding onto that small win, but now he’s gained an excessive amount of weight since Friday so that’s another obstacle we’re trying to figure out. We appreciate all the prayers, messages, and support more than y’all know.

05/23/2026

Surgery went well yesterday, we’re working on keeping our pain under control and some labs back to normal so we can get on the right track to heading home.

Thank you guys for all your prayers and support over the last few days for our boy, they truly mean so much.

Mavstrong.org

05/22/2026

Hey guys just stopping by real quick to update you guys, Mavryck is scheduled for surgery tomorrow afternoon. They found an abscess in his mouth that is infected, so it needs removed as soon as we can to hopefully get his infection gone. We’re still waiting on several cultures to come back so we’re unsure of if this is the only cause yet. He’s in pain and we’re hoping that the meds start to help soon. Last night was scary, being in the trauma room not being able to help your baby when his vitals are tanking, I hope we never have to experience that again. Anything putting stress on his body can throw him into crisis mode due to the Addisons. We’re going to be spending a few days in the PICU then hopefully we’ll be getting on track to heading home.

We’re missing sissy’s birthday tomorrow but she is such a strong girl, and is so understanding even when she shouldn’t have to be.

Thank you to everyone for reaching out, for praying for Mav, and endlessly loving our family.

I’m sharing our tags again because I have got several messages asking for them. We can’t tell you how much we appreciate every prayer, kind words, and donations helping us through this journey.
Cashapp- $MavryckStrong
Venmo-

05/21/2026

Passing this along from her page, she will update when she can.

Mav man decided last night this was not going to be a short little trip. We started in the ER, then got moved to trauma, to the Pediatric ICU. Please pray for our boy, and his team of doctors that they can find a cause to why his little body is doing what it is.

Mavstrong.org

05/19/2026

Mavs new favorite place to hangout is his hammock, he’s been doing so good lately. We are continuing to wean down meds and praying his body continues to do what it needs to come off these medicines, finally! You are so brave, and so strong Mavryck Easton! 🩵

05/13/2026

Happy Wednesday from our favorite boy!! 💙

We’ve had a few good days over here — continuing to wean meds, letting him rest, and getting back into therapies again! Monday night this sweet boy was FULL blown laughing in his sleep and I can’t even explain how good it felt to hear that sound again. 🥹♥️

Little moments like that remind us our boy is still in there fighting every single day.

If you’re seeing this, leave your favorite color in the comments! 🌈
Sissy got Mav some pink shorts yesterday and now she’s convinced pink is officially his favorite color 😂

05/09/2026

Mavvy update 💙

This pictures from a few weeks ago but I can’t wait for my boy to be feeling himself again, which hopefully is soon!! 🩵

We had clinic today and overall it went really well!

Infusion went smooth, labs came back pretty good today, and we even got a small victory… Mav got to come off one of his meds he’s been on for around days now, when he started chemo he started it. 🥹 We also got to wean some more again, another small step that feels so big!

Overall it was a really good clinic day, and we were cleared to try going two weeks before heading back. That feels huge for us. ♥️

Thank you guys for continuing to pray for and support our sweet boy every step of the way.

05/08/2026

We’re in clinic this morning, can you guess who didn’t want to sleep last night?!

05/06/2026

Mav and Vera have always been so close, this journey has took such a toll on her. She still through everything continues to be the best big sister on earth. Catching little moments like this melts my heart.

Address

Mountain Home, AR
72653-72654

Website

http://mavstrong.org/

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