Braxley the Brave

04/23/2026

January & February 2026

We’re getting closer to present day!! 🤗

January brought a new year… and with that, another round of appointments.

In the first few photos, you’ll see Braxley going through some of her routine testing. Because of her smooth muscle disorder (MSMDS), it affects all of the blood vessels in her body. Most people don’t realize it, but there’s smooth muscle in all of our blood vessels—it helps regulate blood pressure and blood flow by controlling how wide or narrow those vessels are.

One of the most serious aspects of MSMDS is how it impacts this system.

There is also smooth muscle in the aorta, which helps maintain its structure and function. In Braxley’s case, her aorta is dilating—meaning it’s continuing to grow larger. This is something we watch very closely, as it can become dangerous if it grows to the point of dissection, which is life-threatening.

Right now, her aorta is already about three times larger than it should be. She has echocardiograms every six months to monitor it closely.

On the opposite end of the spectrum, she also has severe stenosis (narrowing) in both of her internal carotid arteries. So while one area is enlarging, another is closing. This narrowing can limit blood flow to the brain, increasing her risk of stroke.

In the second photo, she’s having a transcranial doppler test done. This measures how fast blood is moving through the arteries in her brain. It’s another tool we use every six months to monitor if things are changing.

MSMDS is complex. It doesn’t follow rules. And it forces us to live in this constant balance of watching, waiting, and praying.

But January wasn’t just appointments.

It also brought joy. A new kitchen set from her Great Aunt Cathy, lots of imagination, playing with her babies, figuring out her own outfits, and sweet (and sometimes not-so-sweet) moments with her little brother.

February brought our first hospitalization in over a year—but thankfully, it was a short stay.

It also brought a princess party, where she got to be her favorite—Elsa. A beautiful book written by Jenny Brown 💜. And even a rare warm February day that we soaked up outside.

This is the part that’s hard to explain.

How life can feel so heavy and so normal all at the same time.

How behind the smiles, dress-up, and everyday moments… there’s something very serious always running in the background.

That’s why we share.

To bring awareness.
To help people understand.
To remind others that not everything you see on the outside tells the full story.

And most importantly—because education leads to research, and research leads to hope.

For Braxley.
And for every family walking this road.

💜🩵

04/16/2026

October–December 2025

Thanks for hanging in there with me as we get closer to present day.

This season feels like a blur of magic, milestones, and beautiful moments.

Halloween brought a tiny little witch with the biggest personality—walking door to door, bucket in hand, completely in her element.

Then came 3… and somehow, our baby is gone and in her place stands this thoughtful, spirited little girl. At her birthday session, while we were trying to capture “perfect” pictures, she made us all laugh with her sincere concern about her little brother eating a leaf.

We celebrated with her “Despicable Three” birthday party, surrounded by people who love her so deeply.

And then just like that, the holidays were here.

We rode the Polar Express to the North Pole, decorated gingerbread houses (and maybe ate more icing and candy than we used), decorated cookies with family, woke up to Christmas morning magic, and watched her experience the wonder of it all. Her first real snow days—bundled up, cheeks pink, smiling like it was the best day of her life.

From the outside, it looks like exactly what it should be—joyful, full, and full of memories being made.

And it is.

But if this season has taught me anything, it’s this: Don’t take a single day for granted.

Hug your loved ones a little tighter. Tell them you love them—often, and without hesitation.

Because these ordinary, messy, beautiful days are the ones we’ll always look back on and smile about.

They’re everything. 🩵💜

04/15/2026

Check us out in the Springfield Herald!! 💜🤗🩵

News for Springfield and Sangamon County

04/09/2026

July–September 2025

As I’ve been working through this “catch-up” of Braxley’s life, I’ve found myself really thinking about what I should share now that I’ve shared the excitement of Boston.

Of course, there’s so much joy to share—summer days in the pool, her love for her babies, the state fair with dear friends, bringing home our new puppy, trips to the zoo (yes… even the stinky penguins), time with cousins, visits with our favorite pediatrician, twirling in pretty dresses, and pulling out our pumpkins as fall began to creep in.

In these months especially, you can see it…
She starts to lose those baby features and grow into such a beautiful little girl.

But beyond all of that, this season of her life has taught me something deeper.

Braxley has taught me many things—but one that sits heavy on my heart is this:
Be kind. Always.

Because from the outside, everything can look so normal.

You see the smiles, the outfits, the moments we choose to share.
What you don’t always see is what’s happening underneath… the weight, the worry, the reality we carry every single day.

So this is your reminder—one that Braxley has reinforced: You truly never know what someone else is walking through.

Lead with kindness.
Choose patience.
Give grace freely.

Because sometimes, the strongest people are carrying the heaviest things… quietly. Be kind 🫶🏼.

🩵💜

04/02/2026

📝 Sorry it’s a long one, but oh so important 🫶🏼

Last week, I shared about the MSMDS conference—how it changed us emotionally.

But there was a second reason we went to Boston… and this one changed us in a completely different way.

Braxley is now part of a Natural History Study for MSMDS.

And I want to explain what that means—because before this, I didn’t fully understand it either.

A natural history study is how researchers learn what this disease actually looks like over time—how it progresses, what symptoms appear, and what patterns exist across patients.

Because MSMDS is so rare, there simply isn’t enough data. And without data… there are no treatments, no protocols, no clear path forward.

So families like ours choose to participate.
To share Braxley’s medical information, her tests, her experiences—so researchers can start connecting the dots.

Each child in the study is followed for 3 years. We come back to Boston the same week of the same month every year—Braxley’s happens to be in June.

And each month, they bring in two MSMDS patients.

Braxley was paired with Hailie—a teenager who traveled all the way from Dublin, Ireland!

I’m not sure how we got so lucky to be paired with them… but Hailie, her sister, and her mom are some of the sweetest, most genuinely kind people we have ever met. The kind of people you feel grateful to know almost instantly.

That’s one of the unexpected gifts in all of this.

But I won’t sugarcoat it—the week is hard.

The days are long.
They’re filled with tests, evaluations, and appointments across what feels like almost every specialist under the sun.

It’s not easy for a 2-year-old to understand why they’re being poked, prodded, and examined. And it’s not always easy for us either… especially when the news we hear isn’t always what we hope for.

There are moments that are heavy.
Moments that remind you exactly what you’re up against.

But here’s the part that changed everything for us—

Not only is Braxley contributing to this study… we are now directly connected to the very people working tirelessly to save her.

We now have experts who understand MSMDS at the highest level helping oversee her care. People who can guide us, give recommendations, and help us make the best decisions to keep her as safe and as healthy as possible.

That alone is something we will never take for granted.

We were also able to meet up with another MSMDS family who lives in Boston.
And while I wish MSMDS is not what brought these people into our lives… I can honestly say they are some of the kindest, strongest, most incredible people we have ever met.

There is something about this community that is just different.

And in between the appointments, we made sure to soak in every bit of Boston we could.

We explored Salem, saw the USS Constitution, visited the aquarium, ate some amazing seafood, saw Paul Revere’s house, and did a lot of walking and soaking in how different Boston is compared to the Midwest.

Because even in the middle of hospital visits and hard conversations… we are still making memories. We are still living.

And that’s something I never want to lose sight of.

This study isn’t easy.
But it matters.

Every appointment, every test, every piece of data—it all brings researchers one step closer to understanding MSMDS, and one step closer to finding answers.

Braxley may be small, but she is helping pave the way for something so much bigger than herself.

And we are so incredibly proud of her.

If you’ve been following our journey, thank you. Truly. And if you feel moved to help—whether that’s sharing, supporting our fundraisers, or simply continuing to follow along—it all matters more than you know.

We’re building something here.
For Braxley.
For families like ours.
For the future.

And we’re not stopping. 💜🩵

03/26/2026

🚨*Warning - writing this post was heavy on my Mama heart*

June 2025 is a month that changed us forever.

This was our trip to Boston—one that carried so much weight, hope, and purpose. We went for two reasons, and today I want to share the first: the 3rd Annual International MSMDS Conference.

Walking into that space felt overwhelming in the best and hardest ways all at once. For the first time, we weren’t alone in this.
We learned more about MSMDS than we ever have before. We met the doctors and researchers who are dedicating their lives to understanding this disease and fighting for kids like Braxley. People who see our children not as statistics, but as their mission.

But what impacted us most… wasn’t the science.

It was the people.

For the first time, we met other families living this same life. Other parents who carry the same fears. The same unknowns. The same weight that never really goes away. Parents who have held their child’s hand and said, “it’s going to be okay,” while quietly carrying the reality that we don’t always know that it will be.

We are so incredibly blessed with the support system we have at home. Our family and friends have carried us in more ways than we can count. But this… this was different.
Because there is something about connecting with someone who truly understands—without explanation, without words—that changes you.

It changed us.

We built connections with families we can now lean on. People we can reach out to, ask questions, share fears, and celebrate wins with. Before this, I never thought we would meet another family walking this same path. And now, we’re not walking it alone.

And then, there was a moment at the conference that stuck with us—something we will never forget:

“No one is coming to save the day.”

At first, it sounds heavy. But what it really meant was this:
If we want change for our children, we have to be part of creating it.

The research is there. The doctors are there.
But they need us.

That moment lit a fire in us. It’s what pushed Nathan and I to fully step in—to get involved with the ACTA2 Alliance, to start fundraising, to start showing up in a bigger way.

No one is coming in on a white horse.
So we’ll be the ones to bring the brigade.

And if you know me, you know this—I will not stop until my girl gets the help she deserves.

If our story moves you, please share it. Awareness matters more than people realize.

We’re currently preparing for our next fundraiser—our golf outing. If you or someone you know loves to golf, we would love to have you. And if you don’t, there are still so many ways to be part of this.

Because this fight? It takes all of us.

Stay tuned for next week—I’ll be sharing the second reason we went to Boston, and it’s just as important. 💜🩵

03/22/2026

We are still in awe of last night. The Trivia Night for Braxley the Brave was nothing short of incredible.

The turnout, the energy in the room, the laughter, the generosity… it all meant more than we can properly put into words. To look around and see so many people show up—not just to have fun, but to support Braxley and the mission of the ACTA2 Alliance—was overwhelming in the best way.

While we didn’t capture every table in photos, please know that every single person there played a part in something truly meaningful. Because of you, we are able to continue pushing forward—funding research, raising awareness, and fighting for kids like Braxley.

It’s easy to feel small against something as big as a rare disease. But nights like this remind us that we are anything but alone. And in fact, we have a HUGE village and support system behind us. 🫶🏼🥹

From the bottom of our hearts—thank you for showing up, for believing in this mission, and for loving our brave girl.

💜🩵