This is my son Jacob’s story, and right now, we are doing everything we can to keep him stable as he battles a serious, life-altering lung disease along with other complex health issues we are still trying to understand.

I never imagined I would be writing something like this.

Jacob is my youngest son, my baby. Over the last four years, I have slowly watched his health decline without clear answers. During that time, he has lost nearly 60 pounds, grown progressively weaker, and struggled daily with fatigue and muscle weakness. No matter how many doctors we saw, no one could fully explain why this was happening.

Jacob does have celiac disease, but it is well controlled. His doctors do not believe it explains the severity of his weight loss or overall decline. We kept searching, hoping someone would finally see what we were missing.

Then everything changed.

After developing serious breathing problems and chest discomfort, Jacob underwent extensive testing, including a lung biopsy. We were initially told everything looked normal and that it appeared to be emphysema, but Jacob has never smoked or vaped, and the diagnosis didn’t make sense. Still, we were sent home without real answers while his condition continued to worsen.

As a mother, I knew something critical was being missed.

We sought a second opinion at Mayo Clinic.

After further review of his biopsy and imaging, Jacob was diagnosed with bronchiolitis obliterans—a rare, irreversible lung disease. Finally, we had an answer… but it was one no parent ever wants to hear.

Jacob’s lung function is now around 35%. He also has severe air trapping, which puts constant pressure on his chest and makes every breath exhausting. His lungs cannot heal or improve. Right now, the focus is on keeping him as stable as possible, because if his lung function declines further, a lung transplant may become his only chance for survival.

Jacob is currently on the lung transplant list while doctors continue working to stabilize him and better understand everything affecting his health.

He now requires oxygen at night after his oxygen levels began dropping during sleep.

While his lung disease is the most urgent concern, Jacob’s condition is more complex than a single diagnosis. There are additional underlying issues that doctors are still working to understand, including the possibility of an autoimmune component.

His care now involves multiple specialties, including pulmonology, neurology (for POTS), cardiology, gastroenterology due to his continued weight loss, and rheumatology, as doctors investigate abnormal CCP levels and other potential autoimmune factors.

His care requires ongoing evaluation at Mayo Clinic, along with continued virtual and local care in between visits.

His next major in-person evaluation is scheduled for July 27th–30th, during which he will undergo extensive testing, including an echocardiogram, a CT scan, lung function testing, pulmonary and sleep medicine evaluations, and genetic mapping. We are also continuing care in between visits, including an upcoming nutritionist appointment and Rheumatology follow-up.

These visits are critical in understanding everything happening in his body, not just his lungs, but the bigger picture and determining the next steps in his care, including whether a lung transplant evaluation will be necessary.

Because his lungs are so fragile, Jacob cannot fly. We must drive two days each way to safely get him to Mayo Clinic. His visits require multiple days of testing and appointments, followed by the long drive home.

Because of your support, we were able to attend previous Mayo Clinic visits and get Jacob critical care and testing. Our most recent trip was especially expensive due to seasonal costs, and every dollar raised has gone directly toward travel, lodging, medical expenses, and the care he needs.

As we prepare for this next trip in July and the continued care that will follow, we are now working to rebuild and sustain those funds. This includes not only travel and lodging, but also ongoing medical bills, testing, and the many day-to-day needs that come with managing Jacob’s condition over time.

This is ongoing care, not a one-time visit, and we are doing everything we can to stay ahead of his condition.

Funds raised through this campaign help support ongoing care, including:

• Medical travel to and from Mayo Clinic

• Lodging during extended visits

• Food and daily living expenses during trips

• Ongoing medical bills, testing, and treatments

• Medications and medical needs

• Loss of income while I care for Jacob full-time

I have had to step away from work to care for him. His needs are constant, and my focus is on keeping him safe, stable, and getting him the care he needs.

As a mom, there is nothing harder than watching your child struggle just to breathe. But Jacob continues to fight every single day. He is kind, strong, and deserves a future, and I will never stop fighting for that.

If you are able to donate, we are deeply grateful. If you are not, please keep sharing Jacob’s story. Every share truly helps keep this going and gets us one step closer to the care he needs.

Thank you for standing with us during the hardest chapter of our lives.

With love and gratitude,

Steffenie