02/05/2026
02/05/2026
We have the most AMAZING support system for Jacob.
02/01/2026
Another successful Trach change, thanks to these AMAZING guys and prayer (of course)! Thank you Mark and Jeremy! We love these guys!
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
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:
Four years later, this scripture feels even more true than it did that day.
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
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.
