10/16/2025 Dunbar Medical Check Up

10/16/2025

we had our 6 month check up with Dr Trump today. Everything is perfect. Blood pressure, oxygen levels, pulse, temperature, everything is perfect! Jacob continues to be amazing!!!

10/14/2025 Caregiving is no small task.

10/14/2025

Caregiving is no small task. It’s a journey filled with constant responsibility, and sometimes, one slip-up can feel like the world is crashing down.

Last night, I followed our usual bedtime routine with Jacob — removed the eyelid tape and got him settled in. But this morning, he woke up complaining that his eyes hurt and asked for drops. A few hours later, his eyes looked awful. I immediately messaged Dr. French, who said they looked very concerning and wanted to see Jacob that afternoon.

By 2pm, Barb got home and realized I had forgotten to take out Jacob’s scleral lenses the night before. They’d been in for nearly 20 hours. I was devastated. I cried and cried — I couldn’t believe I’d missed something so important.

But through prayer and grace, what seemed like a serious issue turned out to be a fixable mistake. Dr. French prescribed antibiotic drops, and Jacob should be back to normal in a day or two.

Lesson learned — this dad won’t be making that mistake again. 🙏

10/02/2025 Blood, Blood, and more Blood

 10/02/2025

When the Cough Assist Pulled Blood: A Night We Won’t Forget!

Tonight was supposed to be quiet. We’d just returned home from the Eastern Star event—grateful, tired, and ready to settle in. But caregiving doesn’t follow a schedule. As part of our routine, Barb and I decided to flush Jacob’s tracheostomy, a technique we learned from Dr. de Silva that’s been a game-changer in keeping his airway clear of bacterial buildup from saliva and mucus pooling above the cuff.

What happened next shook us.

As we flushed the trach and engaged the cough assist, it pulled a startling amount of blood. Not streaks. Not tinges. Blood. It was all Barb and I could do not to panic. We stayed calm on the outside, but inside we were terrified. I messaged Jeremy Cobb immediately and asked him to call me as soon as he could.

He called within fifteen minutes—bless him—and by then, the bleeding had already begun to ease. Jeremy explained that sometimes the cuff can adhere to the inside of the throat. When you deflate it, it’s like peeling skin off your lip. It bleeds. And when that blood mixes with mucus and saliva, it looks like far more than it is. A teaspoon can look like a pint when it’s running fast.

We monitored Jacob closely over the next few days, suctioning often and watching for any signs of distress. Thankfully, the bleeding subsided. Four days later, during the next flush, we were able to clear out the old blood and restore everything to normal.

This wasn’t just a medical moment—it was a spiritual one. A reminder of how fragile and sacred each breath is. A reminder of how quickly fear can rise, and how grace can meet it. We’re grateful for the wisdom of Dr. de Silva, the calm reassurance of Jeremy Cobb, and the strength that carries us through nights like this.

10/02/2025 Eastern Star Donation

 10/02/2025

We are deeply grateful to our generous donors, The Order of the Eastern Star, for their extraordinary gift. Today, they presented a check for $16,742 to ALS United Ohio in honor of Jacob.

Their tireless fundraising efforts will bring vital support to hundreds of individuals and families facing ALS—offering hope, resources, and strength to those on the frontlines of this journey.

Thank you for making a difference that truly matters! TeamJacobWV are making an impact on the world around us!

09/22/2025 How Scleral Lenses Helped an ALS Patient Maintain Communication

09/22/2025

In an publication by BostonSite, Jacob was used as the subject of the following article:

https://www.bostonsight.org/how-scleral-lenses-helped-an-als-patient-maintain-communication/

Meet Jacob

When 23-year-old Jacob Harper from Winfield, West Virginia, first heard the words “You have ALS,” in March 2022, he and his father sat in shock. Neither had a clear understanding of what the diagnosis meant. His mother, however, turned pale—she knew the weight of those three letters. Amyotrophic lateral sclerosis, or ALS, is a relentless disease. For Jacob, it was not just ALS but an ultra-rare genetic version, linked to the P525L FUS mutation. Doctors told him to expect only one to three years.

Jacob, once an avid outdoorsman who loved hunting, fishing, and working as a machinist and a welder, suddenly faced a future of increasing paralysis and loss. Yet, through determination, faith, and access to an experimental drug called ION363—nicknamed “Jacifusen”—he has lived beyond those initial predictions. Even as the disease advanced, Jacob and his family found new ways to fight for quality of life.

One of the most unexpected breakthroughs came not from a drug or machine, but from a pair of lenses.

Losing the ability to communicate

As ALS progressed, Jacob eventually lost the ability to move his eyes. He could no longer blink, and his eyelids wouldn’t stay open. Severe dry eye followed, leaving his eyes painfully irritated and threatening to take away his ability to watch television, enjoy car rides, or even communicate. At times, his parents resorted to using cosmetic tape to hold his eyelids open. It was an exhausting, imperfect solution that underscored how fragile his remaining independence had become.

How scleral lenses help ALS patients retain communication longer

Enter scleral lenses. Traditionally used for patients with corneal disease or extreme dry eye, these specialized contact lenses are larger than normal and vault over the eye, creating a reservoir of fluid that bathes the cornea. Jacob’s care team at The Ohio State University had never tried them in someone with ALS before, but they were willing to innovate. Working with Dr. Stephanie Pisano and her team, including a dedicated resident, Dr. Shihij Takoo, Jacob went through multiple fittings to find lenses that worked. They had to account for astigmatism, depth, and comfort, making careful adjustments along the way.

The impact was immediate. With the scleral lenses in place, Jacob’s eyes could stay open and moist, protected from damage and discomfort. Combined with cosmetic tape, the lenses allowed him to keep his eyes open long enough to enjoy daily life again and, most importantly, stay engaged with the people he loves. His father calls the lenses “a blessing,” explaining, “I don’t know what we would do if it had not been for the scleral lenses. In a world where we had already lost almost everything, and we only had communication left, these lenses made sure we were able to hang on to this piece of dignity.”

Maintaining dignity

Communication is one of the cruelest battlegrounds in ALS. Before his eye paralysis, Jacob was lightning-fast on an eye-gaze computer system, astonishing his speech therapist with his speed. He could email, text, and even shop online almost as quickly as before his diagnosis.  In fact, it was almost as if his family could have regular conversations with Jacob. As his voice deteriorated, Jacob’s family connected with Bridging Voice, a nonprofit based in New York City, who assists ALS families with communication technology. They were put in touch with ElevenLabs, who uses clips of a person’s voice to create an electronic voice. Using videos, they created an AI duplicate that sounded almost identical to Jacob.

When he lost the ability to move his eyes, that option disappeared. Today, he communicates using a neuro-node system connected to his leg muscles. Though slower, it still allows him to share his thoughts and direct his smart home devices. Today, scleral lenses make it possible for him to keep his eyes open, protected, and moisturized, allowing him to interact with his environment and preserve the vital connection between his mind and the outside world.

For the Harper family, the lenses are more than a medical tool. They are a bridge. They have enabled Jacob to remain present in everyday moments, whether watching movies with his parents, listening to vinyl records, or taking long drives, where his father straps him into his beloved Mustang and takes him out on the open road.

ALS is a disease defined by relentless loss: the loss of movement, speech, independence, and time. But in Jacob’s case, scleral lenses hit the pause button, allowing him to maintain communication longer. They offer comfort, vision, and dignity in the face of one of life’s harshest challenges. And in doing so, they keep open a window to the world that would have otherwise closed too soon.

Learn more about Jacob’s journey at www.TeamJacobWV.org

09/13/2025 A New Carport for Jacob

 09/13/2025

Today was a beautiful reminder of what community looks like in action. Randy, along with five friends from our church, showed up with tools in hand and hearts wide open to help us build a much-needed covering for Jacob’s transfers from his room to our van. What they created is essentially a carport—tall, wide, and thoughtfully designed to shield Jacob completely from the weather. No more rain-soaked outings or scrambling to keep him dry.

The labor was going to be the most expensive part of this project, so having it gifted by friends was an incredible blessing. The materials were funded through a generous grant from Racing for ALS, and the final result couldn’t be more perfect.

Gratitude doesn’t even begin to cover it.

09/08/2025 Tracheostomy Change

09/08/2025

It has been 60 days since Jacob's last trach change. TOnce again, we called upon our friend, Jeremy Cobb, who has extensive experience in dealing with tracheostomies and has volunteered to come and do this change for us.

We elected to do it today with the help of Jeremy and Mark Toole. This change was again, the best yet! 
Jacob was completely at ease for this change and everything went fantastic. Even after the fact, his peak inspiratory pressure stayed down below 20 PIP and we experienced no issues whatsoever!