Team Fults

05/29/2026

Sometimes God gives you glimpses of His goodness and faithfulness.

Almost ten years ago, our Hadley landed in the ER, and we came terrifyingly close to losing her. Overnight, she lost so many abilities. She couldn’t talk, feed herself, or do many of the things that once came naturally. It was a season filled with fear, uncertainty, and countless questions.

During that time, Devon and I prayed around the clock. We did not know what God was going to do, but we knew we could trust Him, and we knew we had to trust Him with her. From the very beginning, we understood that Hadley was never truly ours; we were simply stewards of this sweet girl God had entrusted to us.
So many nights in that hospital room, we played worship music beside her bed. There were moments when worship, prayer, and holding onto each other were the only things carrying us into the next morning.

Last night felt like one of those sweet glimpses of God’s kindness.

Hadley played drums in our youth praise band, and she did SO well. Watching her worship through music was something that once felt beyond our imagination. Even sweeter, her brother Hayden, who has quietly been such a steady and faithful strength through all of this, played bass right beside her.

When she first got sick, we could not have imagined a night like this.

We still do not fully know what their future, or ours, will look like. But we are deeply thankful for the One who holds her life in His hands, and we are grateful that together, we get to praise Him.
God has been so faithful.

05/22/2026

Today was another long day for our girl. We spent about 4 hours with her neurology team here. We pulled several specialty labs that will hopefully give us more answers and direction.

Right now, in addition to her autoimmune small fiber neuropathy, we are trying to determine whether there may also be involvement of her large nerve fibers and muscles. Those are all very different conditions with very different implications… and honestly, roads we’re praying we don’t have to walk down.

One of the specialty panels being sent off may give us a lot more insight, but now we wait. Again. We’re not good at waiting!

He also wants to repeat her muscle biopsy to better track progression of the disease. If you know our girl, you know that was incredibly painful last time, so that definitely was not welcome news today.

One thing we did learn is that her neuropathy and B12 levels may be connected more than we realized. So for now, she’ll start weekly B12 shots to try to get her levels where they need to be, and hopefully eventually back down to every few weeks for shots.

This sweet girl has summer plans, big dreams, and zero desire to spend her teenage years talking about nerve fibers, biopsies, and lab panels. Today was heavier than most for her because of more interventions being added in and more potentially on the horizon. It’s just heavy and hard sometimes. It’s even more heart breaking I can’t carry it for her. God has been faithful to meet us in every season. We will trust him to meet us here too.

We’d love prayers for healing, wisdom, stable symptoms, and as much of a normal, pain-free summer as possible for her. We will trust. He will provide!

05/21/2026

We finished school yesterday and immediately left for a 5-6 hour drive to Austin. We’re at Dell Children’s today meeting with one of the only specialty teams in the nation for Hadley’s form of autoimmune small fiber neuropathy. The last few months have been rough, but thankfully things seem to have leveled out some. We have some things to figure out for her but we have the right people in the right places so we are at peace!

In English for us non-medical people…small fiber neuropathy affects the tiny nerves that control pain, temperature, and autonomic functions. In Hadley’s case, it means significant nerve pain and difficulty regulating temperature because her body doesn’t sweat normally. That’s a pretty big deal when you live in Southeast Texas and summer feels offensive. 🫠

We’re praying IVIG keeps doing its job and that we don’t have to move into more aggressive treatments like chemo. This girl already has her whole summer planned out and we want it as normal and pain free as possible. More kid stuff. Less medical stuff.

Per usual, coffee is life…we found the most amazing place in Austin. Coffee without small talk! Anyone struggle to “people” before coffee?! Just me?! Welp…that’s awkward! A***e Coffee for the win yall!

Prayers appreciated for wisdom, direction, and healing. We will trust, He will provide!

03/17/2026

It’s a busy week for us….

We’re pulling labs before sunrise for the girls… which of course also means a small fortune at 7Brew to keep everyone alive and functioning ☕️. Hello sweet and salty for Mom!!!!!

Hollyn:
We’re checking in on her metabolic disorder this morning. We know Hadley’s levels have been off, so we’re praying Hollyn’s come back steady and within range.

Hadley:
The last few months she just hasn’t felt like herself. She’s been more tired, more leg pain and overall just feels off.

Her labs are starting to tell a bit of a story. Her B12 has dropped and her carnitine is low. Her team is beginning to see her body running low on fuel. With her autoimmune gastritis, we’re wondering if she’s just not absorbing what she needs, and over time that’s catching up with her energy and her nervous system.

Her autoimmune small fiber neuropathy has caused more pain, more discomfort and if her body is already running depleted, that just makes everything hit harder.

She’s tired of being tired… and honestly, she’s sick of being sick and we are too. We’ve got way too many fun things to do for this to keep slowing her down. So, we’re pushing through and doing the fun stuff anyway, even if that means more downtime afterwards.

We have treatment this week and an appointment with her neurologist in Austin in a few weeks. Pray for clear answers, simple solutions, and relief for her sweet body. 🤍 We will trust. He will provide!

03/05/2026

Update for those praying.....

Quick Hadley update for those following along and praying...

We’re still in the thick of labs, phone calls, and trying to connect the dots between several different teams. Some results are starting to give us a little more clarity, even if the overall picture is still… complicated.

What we’re learning right now is that her B12 levels shifted significantly and her carnitine is low. Even though she’s dealing with Hashimoto’s and Graves, those don’t seem to be the biggest drivers of how she’s feeling at the moment. The last treatment did help some, which was encouraging and also told us that at least part of this is autoimmune-mediated.

At this point it’s looking like a combination of her metabolic disorder, autoimmune stomach issues affecting absorption of B12 and iron, and increasing symptoms from small fiber neuropathy. The nerve pain has been worse lately and has started moving into her arms, not just her legs.

Honestly, just one of these conditions being off can make you feel terrible. Seeing all three flaring at the same time helps explain why she’s been feeling so awful lately. Sometimes as parents you wonder if it’s really that bad but these labs are confirming what she’s been trying to tell us. She really has been feeling as rough as she’s said.

The hardest part is that she’s so ready to just be a normal kid again. I hear her say that often. She loves volleyball and running and wants to keep up with her friends. And honestly despite how she feels, she does still keep up. She pushes through, says very little, and keeps going and then comes home and crashes. Watching her do that has taught me more about tenacity, courage, and grit than I could ever teach her.

Right now we’re trying to coordinate care between metabolics, neurology, and GI across three different hospitals, which feels a little like a wicked game of whack-a-mole. So if you’re praying, pray for wisdom as we keep piecing this together and maybe that all the teams keep playing nicely in the same sandbox while we try to get our girl feeling better.

Doesn’t normal kid stuff look good on her? Volleyball, friends, being a kid… this is what we keeping fighting so hard for.

We will trust, He will provide!

03/01/2026

In honor of Rare Disease Day…

If you live in this rare disease world, you know it’s a strange place to belong. No one signs up for it. You don’t ask to be here, and you certainly don’t plan for it. One day you wake up and realize your “normal” looks different than most. For us, that moment came on a random Monday ten years ago when Hadley got sick.

In our family, rare isn’t just one story. It began with Hadley, continued with Hollyn’s metabolic disorder and kidney issues discovered at her birth and later included my own brain tumor diagnosis three years ago. Rare has touched each of us and reshaped our normal in ways we never expected.

Rare can feel isolating. It can be exhausting. It often looks like long appointments, confusing labs, yesterday’s makeup still on your face, and advocating for your child when you’re already running on empty.

But here’s what we’ve learned, rare also gave us the gift of resiliency. It's meant brave kids and allowed our family to discover a strength we never would have known otherwise. Most of all, it means we've experienced a faith that has been tested AND HELD. He never failed us!

So if you find yourself in this club too, we see you and we stand with you. We are grateful for every ordinary day that once felt impossible.

We never would have chosen this road but we are grateful for the lessons learned inside of it. God has been so good. We are blessed far more than we deserve. We've learned the gift we have in each other and we don't take that for granted. We've learned to be present and be truly grateful for the ordinary. We will continue to trust because He has ALWAYS provided! Thank you for being a witness to our story. Your support has meant so much!

02/20/2026

02/19/2026

Pray for clarity and direction and solutions…..

02/10/2026

Good news!!! 🎉 We get to space out scans. 🙌

The neurosurgeon said there was some growth, but it was small. He also said it could be up to five years before the next surgery, which somehow feels way too close and like an eternity at the same time. It’s a weird tension to live in.

God is good, and we are deeply grateful.

If you’re praying with us, pray we can “be where our feet are.” That we stay present and don’t feel like we have this huge count down clock running in the background. Pray that we love the people God has placed closest to us well and that we don’t borrow worry from a future that isn’t here yet—especially about surgeries that aren’t today’s assignment.

Thank you for walking a long side us! Your support and prayers are truly a gift! We will trust, He will provide!

02/10/2026

It’s scan day. Memorial Hermann before sunrise it is!

Which means a little anxiety is along for the ride.

That’s one of the long-term souvenirs a brain tumor leaves you with. This is just part of our normal now, living with a tumor, routine MRIs, and knowing future brain surgeries are likely somewhere down the road. It hit me yesterday when Hayden asked me if more surgeries were in my future. We were honest and said yes but we hoped it’s many years down the road. I could hear a shift in his tone when he asked us how long before?! We’re so grateful for where I am. The residual damage could be so much worse but there are moments when anger and sadness creep in when this whole thing is still part of or normal conversations and our kids worries. Just keeping it real. We can love Jesus and still hate brain tumors right?!

So, today’s plan….coffee and chick-fil-a ✅ ✅, MRI ➡️ walk straight over to the neurosurgeon so he can read it with us in real time. No waiting, no spiraling (okay, less spiraling).🤷🏻‍♀️🤣♥️

We are as emotionally prepared as caffeine and chicken minis can make a person.

If you think of us today, we’d love prayers. Pray for peace, calm hearts, and good news. We truly feel like things will be stable.

Also, this weekend Josh and I had the privilege of speaking at a marriage conference. Truly such a gift—one we don’t take lightly. God is faithful in the big moments and the scan days, and sometimes He lets them happen in the same week… because he knew we needed it.

So, we are grateful, a little nervous, very caffeinated and fully trusting. We will keep trusting because we know He will provide!