08/14/2026 Hospital Follow‑Up Appointment at Dunbar Medical

 08/14/2026

Today we had our hospital follow‑up appointment with Dr. Trump at Dunbar Medical, and it was exactly the kind of visit we needed. He examined Jacob thoroughly and walked us through several recommendations based on the concerns raised during his hospital stay.

One of the biggest takeaways: we are now convinced Jacob did not actually have pneumonia. The hospital bundled together a handful of worst‑case‑scenario infections and treated him with a barrage of antibiotics to wipe out anything that might have been present. While we’re grateful they were cautious, it’s clear now that Jacob’s lungs were not the issue.

Dr. Trump was very encouraged by Jacob’s vitals. He believes the high triglycerides were caused by the infection and the DKA (diabetic ketoacidosis) that happened when Jacob’s blood sugar skyrocketed the night he was admitted. With those issues resolving, Jacob’s numbers and overall stability look much better.

A huge blessing last week: Dr. Trump was able to get Jacob approved for the Dexcom Continuous Glucose Monitoring system. This means no more constant finger pricks — something Jacob’s poor hands desperately need a break from.

He does want to run some follow‑up blood work in about a week, just to make sure everything continues trending in the right direction. But overall, he feels very good about Jacob’s current health and the direction things are heading.

Step by step, Jacob is getting stronger — and today was another encouraging move forward.

08/12/2026 Marshall Health Endocrinologist

08/12/2026

Today we had our appointment with the endocrinologist at Marshall Health, and it was a really productive visit. We met with Lacy and Cindy, who were both incredibly kind and thorough. Cindy evaluated Jacob and made an important change to his diabetes management: she has taken him off the sliding insulin scale. Instead, Jacob will now receive his insulin 15 minutes before each meal, which should help his numbers stay steadier throughout the day.

They also adjusted his feeding schedule. Jacob will now have four meals a day instead of three. It’s the same total amount of formula he’s always had—just divided into an extra feeding to help his body process everything more smoothly.

When we first started this new insulin schedule, Jacob was receiving 7 units. Over the last three days, we’ve gradually increased that to 12 units. His glucose levels have been ranging from 130 to 255, and we’re working hard to keep him under 250 as his body adjusts. This period is known as the honeymoon phase, where his system is learning this new routine and settling into a more stable insulin pattern.

Every day brings new information, new adjustments, and new hope. We’re grateful for the team at Marshall Health and for all of you who continue to pray, support, and walk alongside us. Jacob is strong, resilient, and adapting beautifully—and we’re right there with him, learning as we go.

08/08/2026 WHEELIN' FOR ALS 2026 - Our Biggest Year Yet

 08/08/2026

Wheelin’ for ALS 2026 — Our Biggest Year Yet

This year’s ride was our biggest year yet, and our hearts are overflowing. We raised over $30,000 for ALS, all of which went directly to Racing for ALS. They’ll distribute every dollar as patient assistance funds and grants to families walking the same road Jacob is on. Knowing the impact this will have makes every mile worth it.

Jacob had an absolutely wonderful time, and the day was made even more special when Scott Lloyd rolled in with his Hendrick racecar for the sendoff. Everyone loved it — it was a moment none of us will forget.

The last few days of rain turned the trail into a super fun off‑road adventure, and riders were already saying they can’t wait for next year. The joy, the laughter, the mud — it all came together perfectly.

We are overwhelmed by the generosity and love our community and church continue to show Jacob and those living with this disease. Your kindness keeps us going.

All this… and Heaven too. God is good.

08/05/2026 Heading Home from ICU

08/05/2026

Jacob is finally headed home from the hospital. What began as an absolute nightmare was brought under control within the first 24 hours, and we are so grateful. The hospital allowed both Barb and me to stay with him in the ICU, which meant we could care for him exactly the way we do at home. That made all the difference.

Jacob is now officially a Type II diabetic, and he’ll be on an insulin regimen until we can meet with endocrinology on August 25. Even with all of this, he feels great and is more than ready to get back home.

God has carried us through another storm, and we are thankful for every prayer, every message, and every bit of love you’ve sent our way. We’ll keep you updated as we move into this next chapter.

08/03/2026 Getting Better

 08/03/2026 

UPDATE ON JACOB 8/03

We serve a mighty God, and He is still at work!

The hospital has officially changed Jacob’s diet, and he is now on a diabetic formula for his feedings. Since Friday, he has been off all of his normal medications — and every one of his vitals has come down into a perfect range. This alone has us believing that some of the meds he was on may not have been helping, and may have even been causing more harm than good.

His blood sugar has stayed below 200, ranging from 143 to 181, and the team is working to find the right insulin level to keep him stable. But we are absolutely heading in the right direction.

08/02/2026 Diabetes?

 08/02/2026

The past few days have brought news we never expected, and we’re still trying to catch our breath.

The hospital has determined that Jacob has a slight pseudomonas infection in his tracheostomy, along with MRSA. On top of that, we learned he is now an insulin‑independent diabetic. This diagnosis came as a complete shock. It felt like it appeared out of nowhere — but his blood sugar told the story. It climbed all the way to 800, when a normal range is 70 to 99. He was in a very dangerous place, and we are grateful he was already in the hospital when this happened.

We are still in the ICU, and according to the doctor, Jacob will not be moving to a step‑down unit. When he is discharged from ICU, we will go straight home. That alone tells you how carefully they’re watching him and how much support he’ll need once we leave.

Jacob is going to be on a significant amount of insulin. Even his formula from Kate Farms contains more sugar than his body can handle right now, and every feeding causes his levels to spike. We’re working closely with the team to figure out what adjustments need to be made so he can stay stable.

But here’s the part that feels almost unbelievable:

In spite of the infections and the diabetes, Jacob actually feels very good. And I can only imagine how much better he will feel once they get his insulin dialed in and his diet corrected so his levels stay in a normal range again.

Looking back over the last three weeks, the signs were there — extreme thirst, constant urination, and symptoms that were becoming harder and harder to keep up with. These are classic signs of diabetes onset. But when you’re caring for a 27‑year‑old young man with ALS, diabetes is not the first thing you think of. Once again, hindsight makes everything clearer.

It’s been a lot to take in — infection, MRSA, diabetes, ICU, new routines, new risks — all at once. But Jacob is fighting, and we are right beside him. We’re leaning on God’s grace, the skill of his medical team, and the strength that has carried us through every chapter so far.

One step at a time. One breath at a time. And as always, thank you for lifting Jacob up in prayer.

07/31/2026 Hospital Bound

 07/31/2026

Today, Friday, July 31, turned into one of the hardest days we’ve faced in a long time.

Jacob woke up seeming fine, just like any other morning. But by 2:30 in the afternoon, everything changed. He stopped responding — no knee movement, no reaction to my questions, nothing. At first, I assumed he was just having trouble moving his leg, so I fed him as usual. Our friend Randy visited for a while, and we watched TV through the afternoon, hoping he’d perk up.

But as the evening went on, my wife and I grew more and more concerned. No matter what we tried — even things that would normally make him cry — Jacob just stared off into space, completely unresponsive. It was like he wasn’t even with us.

We called our friend Mark Toole, who is an RN. Mark came right over and checked all of Jacob’s vitals. Everything looked okay on paper, but the lack of any response was too serious to ignore. At 8:30 PM, we called 911. The ambulance arrived before I even hung up the phone.

The paramedics worked on Jacob in our driveway for a long time and determined he was septic. He was rushed to CAMC Hospital, where he went through a battery of tests — bloodwork, urinalysis, CT scan, chest X‑rays, and more.

At 2:00 AM, Jacob was admitted to the ICU.

He is still unresponsive.

Doctors have confirmed pneumonia and a severe infection they are still trying to pinpoint. His white blood cell count is extremely high, and he is septic. He is also in Diabetic Ketoacidosis (DKA), likely triggered by the infection.

We are exhausted, scared, and praying without ceasing.

07/15/2026 Our Two‑Day Adventure to See Big Boy 4014

 07/15/2026

When God Redirects the Journey: Our Two‑Day Adventure to See Big Boy 4014

Most of you know that since he was a baby, Jacob has loved trains — not just loved, but absolutely adored them. He could identify steam engines by their whistles before he could even pronounce half their names. So when Union Pacific restored the legendary Big Boy #4014 for America’s 250th birthday and sent it across the country, we knew we had to try to get Jacob in its presence. This wasn’t just a train to him — it was a once‑in‑a‑lifetime dream.

Day One: The Heartbreak in Fostoria

We woke up at 6 AM Tuesday morning and made the long drive to Fostoria, Ohio, where Big Boy would be on display from 9 AM to 3 PM. We arrived at 1:30 PM… only to find traffic backed up for miles. We inched forward for nearly three hours, crawling through a three‑mile stretch of cars.

By the time we reached the train yard, it was almost 4 PM — and the exhibit had just closed.

We explained Jacob’s situation. We explained the long drive. We explained that he has ALS and that this moment meant the world to him. But there was no empathy, no exception, no “let’s see what we can do.” We were simply turned away.

To make matters worse, even viewing the train from a distance was impossible. A large white tent had been set up for an employee event, completely blocking any view of the massive locomotive.

We drove to our hotel an hour south of Fostoria, and the van was filled with disappointment. At one point we looked back and saw tears rolling down Jacob’s cheeks. That sight broke us. We knew we had to find another way.

The Community Responds

I posted a short message on Facebook about what had happened. Within minutes, messages started pouring in — people trying to help, offering ideas, making calls, doing whatever they could to help Jacob see Big Boy.

We decided to drive another hour northwest to Continental, Ohio, where the train would stop the next morning for 20–30 minutes before heading to Fort Wayne.

I called the mayor’s office and spoke with Cindy, who was incredibly kind. She couldn’t guarantee anything, but she told us the bank across from the tracks had handicap parking and that if we arrived early, we’d likely get a spot.

I posted that update — and immediately got a call from Joey Stevens, our youth pastor at Winfield Baptist Church. Joey was thrilled we were heading to Continental… because he used to live there. His wife Christie worked at the bank — with the mayor, who was also the bank president.

Within minutes, Christie made a call, Joey made a post, and suddenly we had a guaranteed handicap spot as long as we arrived by 10 AM.

Day Two: God Opens a Better Door

We woke up at 5:45 AM and arrived in Continental at exactly 8 AM. Our spot was waiting for us — reserved, protected, and perfect.

And this town… this town is filled with some of the most wonderful people we’ve ever met. True salt‑of‑the‑earth folks. We instantly fell in love with them.

We met Joey and Christie’s family — her parents, her sister, her niece — all of them came out to meet Jacob and spend time with us. We met an older couple from North Carolina, and a gentleman originally from Poca, WV. Everyone was kind. Everyone was excited for Jacob.

The police told us that if we stayed under the shade tree, we wouldn’t be able to see the train because the street would fill with spectators. They encouraged us to move right up to the tracks — and we did.

But the heat was brutal. Jacob’s skin is extremely sensitive now, and we were worried about sunburn. Around the corner was Okuley’s Pharmacy & Home Medical Equipment. They were closed for the train’s arrival, but the door was unlocked, so I stepped inside.

A gentleman told me they didn’t sell umbrellas, but he thought they might have some old ones in the back. A young lady went to look — and came out with two very old umbrellas, probably from the 1940s. They gave them to us with a smile.

We strapped one umbrella over Jacob’s torso and one over his legs, and his little battery‑powered Menards fan kept him cool in the 93‑degree heat.

The Moment God Had Waiting for Him

When the train was close, someone up front shouted, “Let’s move aside and let this young man up front!” And the crowd parted like the Red Sea.

Jacob had a front‑row seat to the greatest, largest, most powerful steam locomotive in the world.

He saw it arrive. He heard that thunderous whistle — multiple times. He watched it depart, pulling its full consist behind it.

I filmed the entire thing so he can relive it anytime he wants.

God’s Timing Is Always Perfect

Looking back, it’s clear: God closed the door in Fostoria because He had something better waiting in Continental.

He used His people — Cindy at the mayor’s office, Christie and Joey, the folks at Okuley’s, the Continental community, and yes… even the ones who turned us away. Because every step led us to the moment Jacob was meant to have.

God loves us more than we can ever understand. And He always has a plan — even when we don’t see it yet.

“Trust and obey, for there’s no other way, to be happy in Jesus, but to trust and obey.”

07/01/2026 TREATMENT #21 ION363 PHASE III #6

07/01/2026

This week marked Jacob’s 21st clinical trial dosing of Ion363 (Jacifusen), and it was a stretch of days filled with relief, gratitude, and one terrifying moment that reminded us how quickly life can turn.

Because Dr. Kolb was out of town, our usual Monday appointment was moved to Wednesday. We headed to Columbus early Tuesday for Jacob’s optometrist visit, where Dr. Pisano gave us great news — the redness we’d been worried about was simply dryness, easily fixed with drops on the sclera. A simple solution, and a huge relief.

Early Wednesday morning we arrived at the Martha Morehouse Center for Jacob’s lumbar puncture. Dr. Kolb remains cautiously optimistic — scientific, steady, and hopeful — and praise the Lord, the procedure went perfectly.

By late afternoon Jacob felt good enough for a mall trip, leaving with new Crocs, sunglasses, and a Midland album. Back at the hotel, we settled in for a movie… and then everything changed in an instant.

During a routine trach suction, his respirator somehow powered off. When I turned back toward him, Jacob was ghost white — not breathing. We still don’t know whether it was a malfunction or something accidental, but Heather from Apria will be checking the machine. Thankfully, my wife stayed calm and yelled for the cough‑assist. It worked immediately, Jacob’s color returned, and I was able to power up the backup respirator. We won’t use the faulty one again until it’s cleared.

After that terrifying moment, Thursday’s quiet drive home felt like a gift.

Another dose behind us. Another hurdle cleared. And another reminder of how quickly things can change — and how grateful we are for every safe, steady step forward.

06/23/2026 More Eye Redness and Irritation

06/23/2026

When we pray specific prayers and tell the Lord exactly what we need, He is faithful and always answers. Sometimes we may or may not know what that answer is right away, but isn’t it amazing when you can see the answer almost immediately?

The first picture was Jacob’s eyes at midnight last night… The second is this morning.

Barb prayed specifically for his eyes last night!

Believe what you will, but…

“As for me and my house, we will serve the Lord.” Joshua 24:15

06/22/2026 Bidet Turned Super Soaker

06/22/2026

Jacob's Massage Therapist, Pam, came over today to give Jacob his weekly massage… and left looking like she’d survived a water‑park ride she never signed up for.

At one point she went to the restroom. What she didn’t know is that years ago we installed a bidet seat for Jacob — and the handle sticks off the side in the exact spot you’d expect a flusher to be.

Well… Pam hit the “flusher.”

Except it wasn’t the flusher.

It was the launch sequence.

Our bidet has a delayed reaction, so she pushed the handle and nothing happened… at first. Then the little sprayer slowly extended itself out of the toilet like it was introducing itself. Pam, confused, leaned in closer to inspect this mysterious object emerging from the seat.

And that’s when the bidet said:

“Target acquired.”

It blasted her straight into Pam.

Shirt soaked. Floor soaked. Pride soaked.

She came out of the bathroom looking like she’d been baptized by a fire hose.

She said she couldn’t figure out how to turn it off, so she just slammed the toilet seat shut and surrendered. Barb had to clean the bathroom like we’d hosted a kiddie pool party in there.

Pam’s final words on the matter:

“I’ll just go to Sheetz from now on.”

06/20/2026 CASS Parade of Steam

 06/20/2026

Since Jacob was 18 months old, we have taken him to "Cass Scenic Railroad" almost every year! He loves those Shay Locomotives, the steam power, smell of burning coal, and those beautiful one of a kind whistles! Since his ALS diagnosis, making the 8 hour round trip, with 2-3 hours onsite, has become increasingly difficult, but he was determined to go this year. SO...HAPPY West Virginia DAY!

On the parade's first pass... he cried. He truly loves that place and even had a job opportunity there, prior to the ALS.

06/11/2026 A Special Gift

 06/11/2026

The Kind of Love That Changes Lives: Our Iowa Family

Many of you have heard us speak about the incredible Hermstad family from Iowa. Jeff and Lori are the kind of people whose story stays with you long after you hear it — a story marked by heartbreak, courage, and a love that continues to ripple outward in ways only God Himself could orchestrate.

Jeff and Lori lost their two beautiful twin girls to the same dreadful monster Jacob battles today — ALS, specifically the P525L gene mutation. Their journey has been steeped in unimaginable grief, yet somehow, they have chosen to turn that grief into compassion, connection, and purpose. And because of that choice, our lives — and Jacob’s life — are forever changed.

A Friendship Born from Shared Pain

From the very beginning of Jacob’s diagnosis, the Hermstads reached out to us. They didn’t know us. They didn’t owe us anything. But they knew our pain, and they stepped into our lives with open arms.

They have stood in our corner ever since — cheering, praying, supporting, and even driving all the way from Iowa to be here for Jacob’s Pioneer Award presentation in April. That’s who they are. That’s the kind of love they carry.

Jaci’s Legacy Lives On

Many people don’t realize that the clinical trial drug Jacifusion — the very drug keeping Jacob with us today — was named in honor of their precious daughter, Jaci. She bravely donated her own body so a drug that had never been tested on a human being could be tried.

Because of her sacrifice, Jacob is still here. There is no greater gift.

A Package on the Porch

This morning, a package arrived on our doorstep. When Barb opened it, we found the most beautiful, custom-made treasures from our Iowa family.

Inside were two handcrafted crosses — one for Barb and one for me — each with Jacob’s actual signature engraved on the back. (How Lori managed to pull that off… well, she is sneaky sneaky!)

And then there was the belt buckle.

Oh my Lord… the craftsmanship, the detail, the love poured into it. Anyone who knows Jacob knows how much he loves his cowboy bling. Boots and buckles were his everyday look before ALS tried to slow him down. This buckle wasn’t just a gift — it was a reminder of who he is, and who he has always been.

The Real Gift

But here’s the truth: The real gift isn’t the crosses or the buckle.

It’s Jeff and Lori themselves.

They are two of the most remarkable people God ever placed on this earth. Their strength, their compassion, their generosity, and their unwavering love have become part of our family’s story. They have walked through the darkest valley imaginable, yet they continue to shine light into the lives of others.

We will treasure their friendship all the days of our lives.

Love Is Stronger

God continues to weave people into Jacob’s journey who remind us that love is stronger than ALS, stronger than grief, stronger than fear, stronger than anything this world can throw at us.

And the Hermstads are living proof.

Their daughters’ legacy lives on — not only in the science that is saving Jacob’s life, but in the love they pour into others, day after day, mile after mile, heart to heart.

04/25/2026 Jacob’s In‑Person ProjectALS Pioneer Award Ceremony

 04/25/2026 

Today Was Jacob’s In‑Person ProjectALS Pioneer Award Ceremony

It was one of those rare days that feels bigger than itself — the kind you know you’ll carry with you for the rest of your life.

The ProjectALS Pioneer Award ceremony was held this afternoon at Winfield Baptist Church, and it was nothing short of extraordinary. Margo, Sage, and Meredith from Project ALS flew in from New York to be here, and Lori and Jeff Hermstad made the long drive all the way from Iowa to spend the day with us. Their presence meant the world.

Between 250 and 300 people filled the auditorium — friends, family, neighbors, supporters, and people who simply wanted to stand with Jacob on this milestone day. The atmosphere was warm, emotional, and full of gratitude. Everything came together perfectly.

The Ridgeview BBQ was a tremendous success, and there was more than enough for everyone. It felt like a true community gathering — people sharing food, stories, hugs, and tears.

Over the past week, we’ve had radio interviews, WSAZ News Channel 3 coverage, and even a feature on the Saturday evening news, all helping shine a light on Jacob’s journey and the importance of this award. Seeing the community rally around him in so many ways has been overwhelming in the best possible way.

Today wasn’t just a ceremony. It was a celebration of courage, love, and the incredible village that continues to lift Jacob up.

04/17/2026 An Opened Door with Synchron BCI

 04/17/2026

After about two weeks of waiting since NeuroLink turned us down, we received an unexpected message — this time from Synchron, one of NeuroLink’s major competitors and a company known for having a far less invasive approach to implanting their device.

Jacob and I agreed to a call with their team. What we thought might be a quick conversation turned into a 45‑minute deep dive into Jacob’s history, his diagnosis, his progress, and his goals. Their team asked thoughtful questions, listened closely, and took the time to truly understand where Jacob is and what he’s fighting for. By the end of the call, they made a decision: Jacob is moving to the next stage.

This places him in what they call a “virtual waiting room” — a holding space where candidates wait for their opportunity to see if they qualify for this next, potentially life‑changing step in communication technology.

So now we wait. Patiently. Hopefully. Prayerfully.

This could be a major leap forward for Jacob, and while nothing is guaranteed, we’re grateful for the door that just cracked open. One step at a time… and today, this was a big one.

04/13/2026 Treatment #20 ION363 PHASE III #5

​Monday marked our 20th clinical trial dosing of our miracle drug, Jacifusen — and the fifth dose since entering Phase 3.

It’s hard to believe we’ve reached twenty. Every single one feels like a gift, and today’s definitely earned a spot in our “top five” list. Everything went as smoothly as we could’ve hoped.

Dr. Kolb was genuinely excited about Jacob’s condition and the direction this drug is heading as it moves toward FDA approval. Jacob’s bloodwork was completely normal, and just like the last few times, he felt good enough afterward to ask for a movie. This time we went to see Super Mario Galaxy, and he loved it.

By Wednesday, the leg pain had returned — a lumbar puncture side effect we’ve unfortunately grown used to — but thankfully it’s nothing a little Tylenol can’t handle.

Another dose behind us. Another day to be grateful. Another step forward.

03/30/2026 Neurolink BCI...When One Door Closes, Another Will Open

​03/30.2026

Jacob and I had a call today with Neuralink’s Patient Registry Team. We went into it with real excitement — this felt like a chance to explore whether a BCI, a brain‑computer interface, might someday help Jacob communicate. Neuralink, Elon Musk’s company, is leading the way in this technology, so the opportunity felt meaningful.

But as soon as we shared that Jacob is enrolled in the Ionis Pharmaceuticals ION363 clinical trial, the answer was immediate. His participation in that study automatically disqualified him from theirs. Even though one is a drug delivered through lumbar puncture and the other is a technological implant, there was no flexibility in their criteria. The door closed quickly and firmly.

Moments like this used to shake us. Now, they remind us of something we’ve learned over and over: when we follow the Holy Spirit and trust the Lord with all our hearts, He is faithful to open another door — often one we never expected — right when we need it.

So we’re not discouraged. We’re not defeated. And we’re not done searching for ways to help Jacob communicate more freely.

We’ll keep praying. We’ll keep trusting. And we’ll keep believing that the right door will open in God’s perfect timing.

03/25/2026 PEG TUBE REPLACED

03/25/2026

Jacob's Mic Key feeding button had been in place since June of last year. These are generally replaced every three to six months, so we made the decision to go ahead and get it replaced. 

The radiology department did a fantastic job and had him in and out within minutes. 

Still loving the new button! So much easier for Jacob and us.

03/16/2026 FOUR Years Later

03/16/2026 

It’s hard to believe it’s been four years since we sat in that room with Dr. Hollinger and heard the words no family ever wants to hear: “It’s ALS.”

Four years since our world tilted… and yet four years of watching God do what only He can do.

And here we are.

Still standing. Still fighting. Still believing.

Because GOD IS AMAZING.

He has sustained us when we had no strength left.

He has saved us in moments we didn’t even realize we needed saving.

He has performed miracle after miracle—quiet ones, loud ones, undeniable ones—reminding us over and over that He has a plan and a purpose for Jacob’s life.

Our friend Sumitha said it best:

“Jacob is already healed… now we wait for his body to show the signs.”

And that’s exactly where we stand today—

in faith, in hope, in gratitude,

trusting the God who has carried us through every valley and every victory.

Four years later, we can say with full confidence:

God has never failed us, and He’s not about to start now.

03/06/2026 2 Mile Walk

​03/06/2026

New haircut and a beautiful day, so Jacob wanted to go for a walk! 

We ended up going about two miles, stopping at the City Of Winfield Boat Dock halfway through.