01/12/2026 Treatment #19 ION363 PHASE III #4

01/12/2026

Yesterday we were back on the road to Ohio State University for Jacob’s 19th clinical trial treatment (Jacifusen / ION363). Even writing that number feels surreal. When Jacob was diagnosed, we were told his life expectancy was 1–3 years… and that was four years ago. Yet here he is — still fighting, still smiling, still defying every expectation placed on him. Every trip reminds us of how far he’s come and how much grace has carried us.

We’re deeply grateful for this trial, for the team behind it, and for the chance it gives Jacob to keep moving forward. God has been faithful every step of the way, and we don’t take a single day for granted.

We made it safely to Columbus, and the day kicked off with the blood draw. Mary — affectionately known as the “Blood Whisperer” — worked her magic once again. She’s one of the few who can get Jacob’s blood without a lot of trouble, and we’re so thankful for her steady hands and kind spirit.

From there, we headed into the clinic for the usual round of tests and prep before the lumbar puncture. It’s never our favorite part, but we walked in ready. Not long after, Dr. Kolb came in grinning, full of energy and optimism. He said Jacob looked fantastic — great color, strong muscle mass — and he even felt Jacob move both legs and saw his eyes move. His excitement was contagious, and it set the tone for the rest of the day. We claimed it right then: this is going to be a GREAT day..

After all the poking, prodding, and medical hurdles, Jacob decided he’d earned a reward. So we went to see Zootopia 2 — and we were the only ones in the theater. The movie was great, and the quiet, private showing felt like a little gift at the end of a long day.

God is good. Our team is incredible. And we’re grateful for every single day Jacob gets to keep fighting!

01/02/2026 FOUR YEARS LATER!

01/02/2026 

January 2, 2022, was a Sunday—the second day of a brand‑new year, tucked into week 52 of the 2022 calendar. It was the first Sunday of the year, the 13th day of winter, and there were still 77 days until spring.

It was also the first of many times Jacob would fall.

01/02/2022

Jacob fell at church today. He was stepping down from the drum riser and hit the floor. This, along with the limp, prompted us to contact Dr. Clark Adkins, of West Virginia Ortho Neuro. Clark wanted to see Jacob, so he asked me to call Kim at his office and schedule an appointment.

We had no idea what road we were stepping onto. No idea how long, how heavy, or how miraculous it would become.

Yet through every step, God has been faithful.

What doctors once described as a 1–3 year life expectancy has now become year four… and we are still here. Jacob is still here. Still fighting. Still smiling. Still blessed beyond measure, even in the midst of disability.

And through it all, this promise has carried us:

“But now, O Jacob, listen to the Lord who created you.

O Israel, the one who formed you says,

Do not be afraid, for I have ransomed you.

I have called you by name; you are mine.

When you go through deep waters,

I will be with you.

When you go through rivers of difficulty,

you will not drown.

When you walk through the fire of oppression,

you will not be burned up;

the flames will not consume you.

For I am the Lord, your God,

the Holy One of Israel, your Savior...”    Isaiah 43:1–3 (NLT)

Four years later, this scripture feels even more true than it did that day.

12/30/2026 Dr Stanton WVU Cardiologist

12/30/2025

One Year Follow‑Up at Cardiology

Today marked Jacob’s one‑year follow‑up visit with Dr. Stanton, our cardiologist. Just like last time, we met with the PA, Ben, who gave Jacob a thorough exam from top to bottom.

The good news is that everything still looks normal. The only lingering issue is Jacob’s exaggerated heart rate, which continues to be managed with his medication. He remains on his beta blocker, metoprolol tartrate, taken twice a day as prescribed.

At home, I keep a close eye on his blood pressure and vitals, making sure we stay ahead of anything that might change. It’s become part of our rhythm—one more way to protect his health and keep him moving forward. Another appointment behind us. Another reminder that every stable report is a blessing!

12/26/2025 Pioneer Award

12/26/2025

Jacob was selected to receive the Erin and Leigh Vierstra Pioneer Award, presented as part of the Alex and Jaci Hermstad Rare Disease Trailblazer Series.

This recognition is given to individuals who are working to advance research and potential therapies within the rare disease community. To be counted among those striving toward progress—alongside families, advocates, clinicians, and researchers—is an honor.

The Trailblazer Awards ceremony will be held online in February, and I’m looking forward to celebrating the incredible people across this community who are pushing boundaries, lifting others up, and refusing to give up.

Thank you to everyone who has supported, encouraged, and prayed for us along the way. This recognition is a reminder of how far we’ve come—and how much hope still lies ahead.

12/07/2025 UPDATE ON JACOB

 12/07/2025

✨ Update on Jacob ✨

It’s been two days since our unexpected ER visit, and I’m so grateful to share that Jacob is doing wonderfully! 🙌

For the first 24 hours, we relied on the water chamber (cascade) to help stabilize things. Now, Jacob has successfully transitioned to an HME (Heat Moisture Exchange). The difference is visible—you can actually see the moisture in his line now, a small but powerful sign of progress.

Moments like these remind us of the incredible power of prayer. Don’t ever stop praying!!! Each step forward is a testimony to faith, perseverance, and the love that surrounds Jacob.

We also want to extend a huge thank you to folks like Amy Malone for her guidance, and especially to Mike Walker—who has faithfully reminded us for two years that the HME was the way to go. Your wisdom and encouragement have been invaluable, and we’re deeply grateful for friends who walk this journey alongside us.

12/05/2025 A Scare, and Finding Moisture for Jacob’s Lungs

12/05/2025 

About a month ago, when Jacob’s trach was changed, we noticed something alarming: a lot of bright, arterial red blood. This ended up resolving itself after a 24 hour period. 

A month later, it happend again! At first, we thought it might be a nosebleed. But when it didn’t stop after two days, our concern grew, and we decided it was time to head to the emergency room.

At the ER, Jacob was scoped to see what was happening. Thankfully, his vitals were good—though his heart rate was elevated, as it always is when he’s nervous at the doctor. What they found was surprising: Jacob was extremely dry on the inside. His nasal cavity, sinuses, throat, esophagus, and especially the airway leading into his lungs were raw and irritated. In fact, there were scabs forming where the suction catheter had rubbed against the dry tissue in his airway.

After nearly five hours in the ER, we were discharged with instructions: medications for his nose to ease dryness, salves to soothe irritation, and most importantly, a way to get moisture into his lungs.

There are two main options for humidification with a tracheostomy:

• Heat and Moisture Exchanger (HME): A small device that warms and humidifies air, replicating the nose’s natural function.

• Heated Water Chamber System: A setup where air passes through warm water via two hoses, picking up humidity before reaching the lungs.

We tried the HME first, but Jacob couldn’t tolerate it—it felt too restrictive, like he couldn’t breathe. So we turned to the water chamber system. Though it’s a bit more equipment, it worked. The warm humidity eased his airway, and Jacob could finally rest.

We’re back home, Jacob is in bed, and all is well. We’ll keep monitoring him and follow up with our family doctor, but for now, we’re grateful for the solution that helps him breathe easier.

11/21/2025 Today reminded me how quickly life can change… (Book End)

11/21/2025

While I was out for a haircut and picking up hoses for Jacob’s respirators, Barb called me in a panic. Jacob had developed a dangerous mucus plug, and his inspiratory pressure was skyrocketing. He was in real trouble.

But Barb—calm, faithful, and courageous—remembered her training. She grabbed the Ambu bag, freed the obstruction, and brought Jacob back to safety. She is our HERO today. What she did was no small thing… it was an emergency that would overwhelm most people, yet she handled it with grace and strength. I could not be more proud of my amazing wife.

Tonight, before bed, I read Jacob our Bible Verse of the Day. The Spirit nudged me to read the whole passage, and it spoke directly into this moment:

Isaiah 43:1–3 (NLT)

“But now, O Jacob, listen to the Lord who created you.

O Israel, the one who formed you says,

Do not be afraid, for I have ransomed you.

I have called you by name; you are mine.

When you go through deep waters,

I will be with you.

When you go through rivers of difficulty,

you will not drown.

When you walk through the fire of oppression,

you will not be burned up;

the flames will not consume you.

For I am the Lord, your God,

the Holy One of Israel, your Savior...”

Sometimes, God’s Word arrives exactly when we need it most.