Axel Strong

10/25/2025

A little story about my thought process behind creating Axel's newest design.
As most everyone is aware our entire family has been THROUGH IT these last.. many years. So every part of this design has meaning behind it.

•AxelStrong, self explanatory.
•Butterfly with blue tones, a butterfly + blue is the MLD symbol/color, as the wings back to back symbolize a child's side face profile.
•Smiley-Face Cowboy- What I know Axel's spirit/soul represents.
•Deck of Cards- Hoping for some lucky cards in our future, lord knows we need it.
•Lightening bolt- Representing Axel's (and Family's) strength and the little spitfire he is.
•Horseshoe- For our Spirit girl, Axel's love for horses, and good luck.
•Dragonfly- Dragonflies have been our sign from Papa, from the other side, confirmed by medium, intuition and the fact that after Papa's service last year when everyone gathered at the Funny Farm afterwards our yard was SWARMED with dragonflies. We had never seen so many at one time!
•Magic 8 Ball- Axel turning 8! + Some Magic & Good Luck!
•Feathers- Feathers have been our sign from Mimi, from the other side, again confirmed by medium and personal experience from multiple family members!
•Lucky Dice- One dice, showing a total of 8 (Axel's age) and the other showing a total of 9, putting good vibes into the universe for a good year ahead.
•Color Scheme- Orange/Yellows, representing the beautiful sunsets we know our guardian angels are sending us + blue for MLD.

So know, when you are wearing your new Ax merch, you're representing and carrying a LOT of our family with you and helping put some good juju out in the world for us!

https://forms.gle/4AiPyMmfdG7QDPk37

10/25/2025

FINALLY!
I got my life together enough to finally be able to share our new merch drop preorder form!

*Important!*
This is just a preorder form, no payment due at this time.
The preorder helps us to determine quantities so we can calculate costs.. so the more we order, the cheaper we can get them.

Feel free to share this link with anyone who'd be interested in ordering + you can submit multiple responses, if you need to submit for a friend/family member!

There are spots to add notes if the form doesn't let you add details or quantities you'd like.

And as always, you can reach out with questions!
Preorder form will be open until November 1 so we can end Axel's birthday month with a bang!

Getcha pre-orders in and represent AX-MAN!

This is a PREORDER signup only, no payment due. Page 1: Adult Apparel Page 2: Youth Apparel Page 3: Accessories Please submit size/color options for your entire family, you can submit multiple replies. If you are undecided on items, select all you are interested in. I'd rather order more than enough...

10/20/2025

10/15/2025 - Axel turns 8!

Birthdays are always to be celebrated, because it is a great accomplishment to be given another year 🖤

While we put on our happy faces and host personalized parties to celebrate, it doesn’t make the birthday time any easier.

It’s more of a reminder, of the limited time we get. We want the world to just stop for a minute, so we can catch up or at least take a still moment to just sit.

Our world crashed and burned 5 years ago and we were given an hourglass that is running out of sand too quickly.
When we were told we’d be lucky to see 3-5 years with ax, and we just hit that 5yr mark, the world got even heavier.

I always say we cannot dwell in our diagnoses, but sometimes.. she just creeps in.
And sometimes, even for the strongest of people, the weight of the world gets too heavy.

So here’s me, days later, letting you all know Axel enjoyed himself so much on his special day. He is SO loved there is no doubt in my mind this little boy is moving mountains.

Happy 8th birthday to my real life angel on earth 🫶🏼
And thank you everyone who sent gifts, cards and sweet messages to the birthday boy!

10/07/2025

Because we are always just flying by the seat of our pants- last minute notice for Axel’s birthday party!!!

Will be a funny farm good time, very chill and relaxed vibes. Everyone’s welcome to come hang for a bit! If you cannot make it, thats okay! We’re going to be doing some other fun things for birthday celebration!

We WILL be doing a new merch drop here soon in honor of our boss man, I know we all like to REPRESENT! I’ll keep you posted when I have the shipping link 🫶🏼

09/18/2025

September is Leukodystrophy Awareness Month and I’ve done absolutely nothing to cause havoc in our community because I have to know what Leukodystrophy is.. because, well, life is whoopin me right now.

So here are some videos for yall to watch, share Axel’s story, teach someone new about MLD.. spread awareness 🖤

I’ll be back to causing chaos for the healthcare system soon enough 🙃

Watch amazing videos in this curated collection Medical Mom Lifestyle•MLD

09/13/2025

Someone book for this open weekend!! So cute and peaceful, perfect little getaway not far from home! (Well, for most of you, probably)

09/07/2025

We are looking to add another RN to our crew of superwomen!
Axel is almost 8!!! Needs someone to come hang out with him, make sure he does his treatments (you will get severe side eye and huffs about it) and make sure he’s spoiled all day long!

Diagnoses is Metachromatic Leukodystrophy, full assist; nonverbal (his face says it all though).
Gtube for medications and feeding, nebulizer treatments, shakey vest time, suction use, O2 support, transfers from bed to wheelie (weight is almost 50lbs! So bring your muscles)

He’s typically a pretty chill dude, but will definitely teach you a thing or two about sass.

Right now we are looking to fill Mondays and Wednesdays with some fill in days. Scheduling is super flexible, and we are able to move days around.

You can adjust your own hours/days, not required to work weekends/holidays unless you really want to hang out with us 😂

MUST be cool & okay with animals and chaos since that’s all our life is!

Employed through All Ways Caring HomeCare and I know they offer certain benefits and such.

Feel free to reach out to me with questions!
Located in Chenoa, IL — 40 mins from Bloomington, 20 minutes from Pontiac.

Share with friends 🖤

08/29/2025

D-Day 2021.
We somehow survived the first year.

Loaded with all the different doctor appointments, all the therapy appointments, specialty MLD clinic appointments and studies, infusions, a look into beginning with home health nursing, MANY insurance battles trying to get equipment, trips to Pittsburgh and fighting so hard to do anything to slow this disease from progressing since we quickly learned there was no chance in stopping it. On top of still battling the Covid plague.
•
This year I can hardly remember if it weren’t for photos to remind me. So lost, confused, angry, in complete shock of what our life has became to look like. Plus so many tears. There really are no true words to describe your first year living and adjusting to a life with a rare and terminal disease.
•
A very long, hard year watching my spitfire of a little boy lose so much so quick. All the dreams and hopes for what his future would look like, immediately smashed into pieces.
•
The “what should have been” is still always there, I will always hold resentment towards all the doctors who wouldn’t take the time to listen or take my concerns seriously.
As well as disappointment for myself for not making my voice louder, my concerns louder, forcing them to take me seriously.
•
It wasn’t until after this first year, getting a real inside view on our f’d up healthcare system, that I truly found my voice.
Things had to change, not just for us but for all the families. And oh baby, I can tell you now those doctors hate to see me on their roster because they know I’m coming in like hell on wheels with some s**t to lay down for them ✨

08/28/2025

Our lives have been so busy managing and adjusting to the ever growing list of chaos, our weeks blend together, I never know what day or time it is and my mind didn’t even register it was almost August 30th.

The last few days I have been severely struggling with basic life duties and could not figure out what was triggering this. I’ve been really researching and learning how trauma and consistent traumatic events over a long period of time affects your body and how to manage it.

It wasn’t until yesterday it hit me, like a ton of bricks, my body was remembering and reliving the trauma of the week(s) leading up to August 30, 2020 although my mind is nowhere to be found.

On August 30, 2020 was the day we got our official diagnosis of Metachromatic Leukodystrophy. Our lives, our bodies, our minds have never been the same since and this date will forever be burned into my heart.

We are coming up on our 5 year D-Day.
We know how lucky we are to have every day that we do with Axel, and this 5 year mark is really a tough one. On our original diagnosis day the doctors told us “we’d be lucky to get 3-5 years left with him” which I know is the average you will see online and this disease really doesn’t follow a specific timeline, so much still left unknown about MLD- which the unknown is the scary part, or maybe it’s for the best in this scenario.

Either way, MLD sucks.

07/08/2025

Axel had a physical therapist that was his “Dr. number 6” and she did just that 💁🏻‍♀️
Queen behavior forever 🫶🏼