Braxley the Brave

03/13/2026

It’s been a rough couple of weeks with the passing of one of our MSMDS warriors. Our hearts have been heavy, but we will keep her memory alive and keep pushing forward in her honor. Here’s the next little chunk of time in Braxley’s life that we’re catching up on.

February & March 2025

In just two short months, it felt like we watched our little girl blossom. Once she was back to full health, we got to see so much joy in the everyday moments—building magnetic towers, loving on her baby brother, matching outfits and tumbling with her cousin bestie, graduating to a big girl bed, enjoying ice shows, and taking her preschool pictures 😍.

It’s crazy how much she changed in such a short time. These months were full of growth, sweetness, and so many little moments we never want to forget.

It’s also been really special for us as her parents to look back and recap her life piece by piece. In the middle of living it all, it’s easy to forget just how much can happen in such a short time. Looking back on these memories has reminded us how much love, joy, and growth have filled her story.

03/03/2026

Tonight my heart feels impossibly heavy.

A sweet baby girl—only 10 months old—passed away from complications of MSMDS, the same ultra-rare disease Braxley is fighting. There are no words that make sense of something like this. It’s not the way life is supposed to go. Losing a child is unfathomable… and it is so deeply, brutally unfair.

Even though we don’t know this family personally, we do know this pain. We know the fear that lives in the background of every day. We know what it feels like to love a child so fiercely while carrying the reality that this disease can turn everything upside down in an instant.

I’m going to share their fundraising page. If you feel led, please consider giving anything you can—$5, $10, $20—whatever is possible. And if you can’t give right now, please consider sharing it, or simply sending a prayer, a kind thought, or a message of support. When families are living through the unthinkable, they deserve to feel surrounded.

This is exactly why Nathan and I keep pushing. This is why we keep fundraising. This is why the ACTA2 Alliance matters so much—because families should not have to bury their babies while the world barely knows this disease exists. We need awareness. We need research. We need therapies brought to real patients. We need hope that is backed by science.

Tonight, we grieve with strangers who don’t feel like strangers—because this community is small, and the stakes are enormous. Please help us wrap this family in love, and please help us keep fighting so that one day, stories like this become rarer… and then nonexistent.

🤍 RIP Faith, your memory will not be forgotten and we will keep fighting for you and all those that came before you, those still with us, and all those that will come after you.

https://givesendgo.com/FaithHensley?utm_source=website_share&utm_medium=sharelink&utm_campaign=FaithHensleyhy

Faith Hensley, just shy of her first birthday, danced into the arms of our Lord on February 28th, surrounded by love yet facing one of life’s cruelest battle...

03/01/2026

Today is Rare Disease Day

We never thought we’d be part of this “club.” You know the one—where you learn a whole new language of genetics, specialists, scans, and emergency plans. Where you celebrate the little wins like they’re Olympic medals… because sometimes they are.

Being part of the rare disease community means living in two worlds at once:
• One where you carry fear and grief in the background, quietly, every day.
• And another where you fight like hell to make sure your child still gets to be a kid—messy hair, dirty hands, big smiles, and all.

Today, Braxley enjoyed the beautiful weather we had. She went down the slide, swung, dug in the dirt, took a walk and jumped over cracks in the road.

On Rare Disease Day, we’re standing with every family walking this road. You are not alone. And your child matters—enough to be seen, studied, funded, and fought for.

For Braxley. For the rare ones. For the future. 💜🩵

02/27/2026

January 25, 2025.

When Kyson was only 3 weeks old, Braxley was admitted to the hospital for profuse vomiting. For most kids, vomiting is miserable. For kids with MSMDS, it can become an emergency fast — dehydration can thicken the blood and raise stroke risk, so we don’t “wait it out.” We rushed her to the ER, where she was quickly started on fluids and admitted. Her little body was working overtime, and you can see in these photos just how completely wiped out she was.

And then we got the answer: another UTI.
In children, a UTI doesn’t always look like burning or frequent urination — sometimes it shows up as vomiting. And because MSMDS affects smooth muscle, and smooth muscle plays a huge role in the urinary tract (helping move urine from the kidneys to the bladder and empty the bladder), Braxley is incredibly prone to UTIs. It’s not “just” a UTI — it’s another system in her body that struggles to do what it’s supposed to do.

After more UTIs than I can recall, a week in the hospital on IV antibiotics, and a week away from my newborn, it was the final straw. With the input of her urology team in St. Louis, her pediatrician, her geneticist, and the team of experts at Mass Gen Hospital, she was started on a daily prophylactic antibiotic to help prevent UTIs before they start. And so far (knock on wood), it’s been working.

The urinary tract is just one example of what makes MSMDS so relentless — it doesn’t pick just one organ. It impacts multiple systems because smooth muscle is everywhere. Some days it’s her heart and vessels. Some days it’s her lungs or GI system. And this time, it was her urinary tract reminding us, again, that nothing about her body is “simple.” We’ll keep doing what we always do: staying vigilant, treating problems early, and fighting for a treatment.

02/19/2026

My beautiful and immensely talented cousin did something incredibly special — she wrote a children’s book about Braxley. 💜🩵

It’s a sweet way to share her story, her bravery, and the heart behind Braxley the Brave with other kids and families.

To see our little girl’s courage turned into something that can bring comfort, hope, and awareness to other families is so surreal.

Braxley’s story has always been bigger than us — it’s been about fighting, loving hard, and making the most of every moment. This book is another way her light gets to reach people.

If you’ve been following our journey and want a sweet way to support Braxley and help spread awareness, please take a moment to check out the book here:

Braxley the Brave: A Story About Living with a Rare Medical Condition (Every Kind of Brave)

02/13/2026

It’s been a minute since I’ve posted a “catch up” on Braxley’s journey. So with lots of excitement, here’s the next little chunk of our story.

From November 2024 to January 2025, we soaked in every last moment as a family of three — including our last Christmas with her as our only child. And then, very shortly after the new year, we welcomed Braxley’s baby brother, Kyson, into the world.

While this page is centered on Braxley and her journey, her story has always included the family and friends who have been right there with us — loving her, cheering her on, and holding us up on the hard days.

Braxley isn’t doing this alone — and neither are we. Thank you for being part of the village that loves her so fiercely.

02/09/2026

Hitting Greens for Genes ⛳️🧬

We’re hosting a charity golf outing to support ACTA2/MSMDS research through the ACTA2 Alliance—and we’d love for you to be part of it!!

🗓️ Saturday, May 16, 2026
📍 Lincoln Greens Golf Course (Springfield, IL)

Registration + sponsorship details are in the images. Please share—and message me if you’d like to sponsor, donate an auction item, or have a team!

02/03/2026

Today marks 3 years since Braxley’s open heart surgery — and I can still feel that day in my bones.

I remember the moment they took our baby from our arms and took her to an OR. The terror that comes when you realize you have no control over what happens next — you can only pray and wait.

We didn’t know it then, but that surgery was the starting line of a journey we never asked for — a life of specialists, hospital stays, hard conversations, and learning how to be brave on days we felt anything but.

And somehow… look at her now.

Braxley has grown in ways that still stop me in my tracks:
- She’s met milestones we weren’t promised.
- She’s fought through setbacks that would flatten most adults.
- She’s become this fierce, determined little girl with a spark that fills a room.
- She has proven, again and again, that she is stronger than the words “high risk” and “rare” that have followed her since the beginning.

But we’re still here — still in it.

Braxley lives with MSMDS (Multisystemic Smooth Muscle Dysfunction Syndrome) caused by an ACTA2 mutation, and right now one of her biggest threats is her aorta dilating. It’s being watched closely, holding our breath at every measurement, and working tirelessly to help push research forward toward the treatment she needs — something that could help slow or stop that growth and change what the future looks like for her and other kids like her.

Because this is what people don’t always see:
Heart surgery wasn’t the end of our story. It was Heart Chapter One.

And it’s Heart Month, which feels especially personal in our home. If you’re reading this, please take a second to:
- Share Braxley’s story (awareness matters more than people realize).
- Learn about rare diseases like MSMDS.
- Support the families living this every day.
- And if you’ve ever wondered if small efforts matter — they do. Research doesn’t move forward without community behind it.

Today we’re remembering the fear… and celebrating the fight.
Happy 3rd heart anniversary, brave girl. You’re our miracle — and our reason.

01/30/2026

Today, we wanted to give a special shout-out and appreciation post to two incredible providers: Tami Hardwick and Julie Fleischer

These two have walked this journey with us — not ahead of us, not behind us, but right beside us. They have learned with us. They have advocated for Braxley. They have taken the time to educate providers who didn’t understand her disease. They have always put Braxley’s safety first, no matter the time of day (and yes, sometimes that meant the middle of the night).

But beyond the medicine, they have been there for us. They have held us up when we felt like we couldn’t stand anymore. They have listened to our fears, sat with our sadness, and given us a shoulder to cry on when the weight of it all felt like too much. They have helped steady us in moments of deep uncertainty and reminded us we weren’t alone.

From our family, with so much gratitude — thank you. You have made this difficult journey a little bit lighter 💜🫶🏼🩵.

01/23/2026

Two years of Braxley.

We have now reached the part in Braxley’s journey of her 2nd birthday. Two years of a little girl who is full of sass, independence, and a determination that cannot be taught. Braxley knows what she wants, isn’t afraid to let you know, and approaches the world with a confidence that stops us in our tracks. She is strong-willed, curious, and relentlessly herself—and we have no doubt that this same determination will serve her well in the life she is fighting for.

That year, we watched her push limits, insist on doing things her own way, and show us just how much fire lives inside such a small body. Those qualities—the ones that made us laugh, pause, and sometimes shake our head—are the same ones that will carry her through the hardest moments ahead.

And while today is about the look back of celebrating Braxleys 2nd birthday, it is also a reminder of why we launched Braxley the Brave and why we continue to work tirelessly to raise awareness and funds for the ACTA2 Alliance.

Children like Braxley who live with Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) face devastating risks, including strokes, aortic dissections, lung disease, and other life-threatening complications. Tragically, many do not reach adulthood.

To change this, the ACTA2 Alliance is working alongside leading clinicians and scientists to develop therapies that could alter the course of this disease. Current research includes Nicotinamide Riboside (NR) as a potential treatment for MSMDS, as well as a gene therapy designed to correct the underlying mutation itself.

While parts of this work were expected to begin testing in children in February 2026, recent cuts to rare disease research funding have delayed progress. These delays have directly impacted Braxley and other children who urgently need these therapies now. Without additional support, these promising treatments may never reach the kids whose lives depend on them.

The impact of this work extends far beyond MSMDS. Advances in ACTA2 research may also benefit individuals affected by Marfan syndrome, Moyamoya disease, Loeys-Dietz syndrome, and even atherosclerosis.

Like any parent would, we will not stop. We will not slow down. We will not accept “later” when our child needs help now. We will continue fighting—because Braxley is already doing her part every single day.

Here’s to many more birthdays, brave girl. You are the reason we fight so hard.

01/16/2026

June through September 2024 was a sweet, steady season for our family.

Braxley had a good run of health with minimal issues, and we soaked up every moment of simply being together with the last days as a family of three. Sunshine-filled days, playground time, snuggles with four-legged best friends, and making everyday memories we’ll always treasure.

As summer faded into fall, we embraced all the seasonal joys — painting pumpkins, exploring with curious little hands, dressing up as Poppy, and trick-or-treating with the biggest smiles.

A quiet chapter. A grateful one. One we will always hold close.

Thank you for joining as we recap how we got where we are today 🩵💜.