Mavryck Strong-Mavs Journey with Cerebral ALD

09/09/2026

Transfusion day for Mav today. Everything went well, and he’s resting really well. Please pray that there are no problems and that this helps make his little body stronger.

He hasn’t been up much the past couple of days, walking like our normal Mav does, so I’m really hoping this helps him get some of that strength back, especially since his transfusion was pushed back two weeks.

Thursday is a BIG day for us. Back in March, there was no light getting to the nerves in his little eyes. Now, I feel like there is something getting in there. Especially the way his eyes are reacting when he is in light. We see the eye doctor, and they’ll do the special little test, and we’ll find out. We are praying so hard for good news.

He’s still eating like a champ! Can y’all believe he’s almost TWO MONTHS and has had no feeding tube?! That is such a huge blessing and something we are incredibly thankful for.

And Friday is the BIG day… one year of having his sister running through his little body, trying to save our boy. One year since she gave him a piece of herself and gave us hope.

Thank you guys so much for everything. For every prayer, every message, every bit of love and support you’ve shown our family. We truly appreciate you more than you know.

09/07/2026

Four more days until Mav’s big day!

One year ago, we were living through some of the hardest days of our lives, and today we’re counting down to a milestone I wasn’t sure we’d ever get to celebrate. I’m so thankful for every single day we’ve been given with our boy.

Four more days. One year. So much to be thankful for.

Mavs Wishlist:

https://www.amazon.com/registries/gl/guest-view/2HZ125EHRSG82?ref_=cm_sw_r_apin_ggr-subnav-share_G63KCD2QAATN379RX3KR&language=en-US

09/04/2026

Happy little Mav this morning, headed to Children’s to get accessed and have labs drawn.

Just 7 more days until our 1 year anniversary Mav’s “second birthday”. This time of year is so incredibly bittersweet. A year ago today, chemo was running through his little veins, preparing his body for the transplant that we prayed would give him a chance at more tomorrows. I look at that little smile today and can’t help but think about everything he has fought through over the last year and just how thankful we are to still be here, watching him smile, grow, and continue to surprise us.

Seven more days. One whole year. So many tears, prayers, hard days, miracles, and reasons to be thankful. We’ll never stop thanking God for continuing to write Mavs testimony. We will never stop thanking Mavs army for every single prayer and thing they have done for our family.

We’ve had so many new people start following Mav’s journey lately, and so many of you have asked how you can help or how you can celebrate his big day with us. We appreciate that more than you know. If you’d like to send Mav and VeraLee a little something for their big day, the link will be in the comments.

09/04/2026

A year ago today, we were just 8 days away from the day that would give Mav a second chance at life, and preparing to start his Chemo the next morning.

We were walking into some of the hardest days we would ever face as a family. The chemo, the fear, the unknown knowing we had to put our baby through something so incredibly hard just to give him a fighting chance. I look back at that little boy a year ago and wish I could tell him just how proud we are of him. I wish I could tell myself that there would be days when I wouldn’t know how we were going to make it through, but somehow, we would. That Mav would fight harder than we ever imagined possible. And now here we are, almost one whole year later. Eight days away from Mav’s first transplantversary, his second birthday. A day that will forever belong to both Mavryck and VeraLee. One fought like hell to stay here, and one stepped up at just 8 years old and helped save her little brother.

This past year changed every single part of our lives. There are pieces of the little boy Mav was before ALD that we still grieve every day, but there are also things he is doing today that we were once told we may never see again. Every smile, every step forward, every meal, every little victory means more than anyone could ever understand.A year ago today, we were preparing his body for transplant. Today, we’re preparing to celebrate an entire year of him still being here.

God has carried our boy through the unimaginable, and He is still writing Mav’s testimony.

Attaching Mav’s wishlist below if you’d like to send him and Vera some goodies for their big day!! We’re redoing his room so we can start transitioning him back into it, and we’ve added lots of their favorite snacks and goodies, along with some toys we think are perfect for Mav now that he’s showing more interest in playing!

Check out this Gift List I just created. https://www.amazon.com/registries/gl/guest-view/2HZ125EHRSG82?ref_=cm_sw_r_apin_ggr-subnav-share_NQCCVWCJNRT4QHJXGQHR_1&language=en-US

09/02/2026

September is ALD Awareness Month. And this month will forever hold a meaning for our family that I don’t think words will ever fully explain.

We are just 10 days away from Mav’s first transplantversary his second birthday. September 11th will mark one year since his big sister, VeraLee, gave him the greatest gift she could ever give… a chance at life.

A year ago, we were walking into the scariest days of our lives. Mav was already so much to ALD, and we had no idea what the months ahead would look like. We watched our little boy endure chemotherapy, a bone marrow transplant, the PICU, infections, procedures, setbacks, and days when we were simply praying for him to keep fighting. ALD changed nearly everything about the life he knew, but it never took away his fight.

And somehow, here we are. Almost one whole year later.

This month, we celebrate how incredibly far Mav has come, we celebrate the little girl who was only 8 years old when she helped save her brother’s life, and we raise awareness for the disease that changed our family forever.

ALD has no cure, and time matters. Early diagnosis can completely change a child’s story. That is why we will keep sharing Mav’s story, keep saying the words Adrenoleukodystrophy and Addison’s disease, and keep fighting for awareness so another family might get answers sooner than we did.

September will always be bittersweet. It holds memories that still hurt to think about, but it also holds one of the greatest miracles of our lives.

Almost one year, Mav man.
Almost one year of watching God continue to write your testimony.

Happy ALD Awareness Month. Here’s to our warrior, his hero of a big sister, and every ALD family fighting this fight.

08/31/2026

Man what a year it’s been to look back, this day a year ago we were doing our rATG do get ready to start his chemo. Man what I’d do to go back in time. We love you our little warrior!! 💙

Day -11
No big changes yesterday. He continued his meds to suppress his immune system and did so well with it.

Day -10
Today he finished his last round of meds before chemo begins. We spent the day playing board games and making the most of our time together. Please pray he stays fever, rash, and flu symptom free from these meds. Those are the mosy common side effects and so fae hes doing so good!!

The next couple days are “rest days,” and tomorrow he’ll get to go check out the special play area designed just for transplant kids. He’s been going a little stir crazy being in this room and not being home so this is something he’s really looking forward to!

We also want to take a moment to say how thankful we are for everyone who came out to the silent auction and to those who donated, helped with it, and to those who bought from it. The love, generosity, and support from our community continues amaze us.

We also want to thank wach and everyone of ypu fo praying for our boy, checking in on us, and just sharing his story. We love you all! 💙

08/29/2026

Man, what a year it has been. A year ago today, we spent our last “normal” day with Mav before our lives changed forever. We finished all of his pre-admission stuff and then spent the rest of the day doing everything he wanted toys from Target, Texas Roadhouse, Spirit Halloween, Bass Pro, the arcade… whatever our boy wanted, he got. I wish I could go back and hug that version of us, because we truly had no idea what was coming. We knew transplant was going to be hard, but we didn’t know just how much would be taken from Mav. We didn’t know the little boy who walked into that hospital talking, eating, playing and being his wild little self would have to fight so hard just to do those things again. We didn’t know there would be a ventilator, infections, feeding tubes, transfusions, endless medications, terrifying nights and moments when all we could do was beg God to please let us keep our baby. We didn’t know we would watch him lose pieces of the life he knew, or that our hearts could break over and over while still somehow finding the strength to keep going for him. But we also didn’t know how many miracles we were about to witness. We didn’t know how strong our little boy truly was, how hard he would fight his way back, or how something as simple as a smile, a bite of food, a word or a step would someday bring us to tears. And we didn’t know just how much his big sister was about to change his story. We are now TWO WEEKS away from Mav’s second birthday his transplantversary. September 11th will forever be the day we celebrate not only Mav and the second chance at life he fought so incredibly hard for, but VeraLee too, because at only 8 years old, she gave a piece of herself to save her little brother. One year ago today, we were just a family soaking up one last normal day, completely unaware that everything we knew was about to change. If I could go back, I’d hold onto that day a little tighter, take a few more pictures, hug him a little longer and remind myself to never take a single ordinary moment for granted. Because sometimes you don’t know it’s the last “normal” day until it’s already gone. And here we are, almost a year later changed forever, still healing, still fighting, still believing, and forever thankful that our boy is still here.

08/26/2026

This boy is continuing to amaze us every single day. We cannot put into words how proud we are of him.

08/25/2026

Someone has been exhausted today, praying it’s just from him being a rowdy little man and not sleeping well last night. I’m so proud of this boy and everything he is doing. Truly does amaze his mommy.

08/24/2026

It’s almost been one year since our baby’s life was changed forever. One year since everything we knew as “normal” disappeared, and we were thrown into a journey we never could have prepared ourselves for. Looking back at everything he has endured, everything he has lost, everything he has fought through, and how far he has come brings emotions I don’t even know how to put into words. This past year has held some of the hardest days of our lives, but it has also shown us more faith, strength, love, and miracles than we ever knew possible. I’d give anything for our baby to have never had to walk this road, but I am so incredibly proud of the little boy he is and the fight he continues to show every single day.

Pictures on the walls no longer have any chance, Mavs favorite thing to do is climb and jump on the couch currently. 😂