Help Jacob Continue His Fight ❤️

My name is Steffenie, and I’m Jacob’s mom. Jacob is 22 years old and has been fighting serious and complicated health problems for years. We finally found answers at Mayo Clinic after years of searching, but his medical journey is far from over.

Right now, we need a minimum of $1970 to get Jacob back to the Mayo Clinic in Arizona for his next round of appointments and testing. We have 9 days to make it happen.

Jacob’s Story

Jacob’s health began declining several years ago. He lost nearly 60 pounds, became extremely fatigued and weak, developed significant pain and neurological symptoms, and eventually began having serious problems with his breathing.

We spent years going from doctor to doctor trying to understand what was happening to our son.

Jacob eventually underwent a surgical lung biopsy. Initially, we were told the biopsy showed emphysema. That never made sense to us. Jacob has never smoked or vaped, and I knew we needed another opinion.

That decision led us to Mayo Clinic in Arizona, and it changed everything.

Mayo specialists reviewed Jacob’s lung biopsy and imaging and gave us the diagnosis we had been searching for: bronchiolitis obliterans, a rare and irreversible disease that causes permanent obstruction and damage to the small airways of the lungs.

There is currently no cure, and the lung damage Jacob has already suffered cannot be reversed. The goal is to preserve the lung function he has remaining and slow or prevent further progression.

But then we learned something else.

Testing at Mayo showed a very high CCP antibody level, and Mayo believes rheumatoid arthritis affecting Jacob’s lungs is the likely cause of his bronchiolitis obliterans.

This is an extremely rare complication, especially in someone Jacob’s age. Rheumatoid disease can affect the lungs even without the typical joint symptoms most people associate with rheumatoid arthritis.

After years of wondering how a young man who had never smoked could develop such severe and permanent lung disease, we finally had a possible explanation.

But Jacob’s Lungs Aren’t the Only Concern

There are still major pieces of Jacob’s health that doctors are trying to understand.

He continues to deal with gastrointestinal problems and difficulty maintaining his weight after losing nearly 60 pounds. He also has POTS and has experienced neurological symptoms including burning, electrical-type pain, numbness and tingling.

Testing has also found persistent low copper, and his Mayo neurologist has been following his neurological symptoms and nutritional deficiencies. He has been supplementing copper and B12 while we continue trying to determine why these problems are happening.

Jacob has undergone extensive testing, specialist appointments and genetic testing, but we still don’t have all the answers.

That is why Mayo continues to be so important.

We Need to Get Jacob Back to Mayo

Our next trip to Mayo is coming up soon.

One of the major reasons for this trip is Jacob’s ongoing gastrointestinal problems. He needs additional GI evaluation, including a small bowel biopsy under anesthesia, as his doctors continue searching for an explanation for his symptoms and weight loss.

He also needs continued follow-up with his Mayo specialists for his severe lung disease and the other complex medical issues affecting him.

Jacob has already undergone a lung transplant evaluation. At this point, the goal is to keep him as stable as possible and preserve the lung function he has. But a lung transplant may still become necessary in the future if his disease progresses.

We don’t know what the future will look like. We just know we have to keep fighting for answers and get him the care he needs.

Where Did the $12,543 Already Raised Go?

I want to explain this because I don’t want anyone to see the amount displayed on this GoFundMe and think that we still have that money available.

We don’t.

The $12,543 shown on this fundraiser is the total amount that has been raised throughout Jacob’s medical journey.

Those donations helped us take Jacob from Oregon to Mayo Clinic twice. They have also helped pay for travel, hotels, gas, medications, medical bills, testing, appointments and other expenses related to his ongoing care.

We still have outstanding medical bills and continuing medication expenses.

Every dollar people have donated has gone toward Jacob and his medical care, and we are beyond grateful. Without everyone’s help, we would not have been able to get him to Mayo twice or get the answers we’ve gotten so far.

But that money has been used.

❤️CURRENT MAYO TRIP: $2030 OF APPROXIMATELY $4,000

Getting Jacob from Oregon to Arizona is expensive. We have to cover gas, food, lodging while traveling to and from Arizona, and several days of lodging while we’re at Mayo.

Our Mayo hotel alone is approximately $1,000 for four days even with the Mayo discount.

We have 9 days to raise approximately $4,000.

And this is the hardest part for me to say:

If we can’t raise enough money, we can’t make the trip.

After everything Jacob has endured and how hard we have fought to finally get answers, I cannot stand the thought of finances being the reason he misses medical care he needs.

If you can donate $5, $10, $20 or anything at all, please know that it truly does make a difference. We don’t need one person to come along and give us $4,000. We need enough people to come together and give whatever they can.

And if you aren’t able to donate, PLEASE SHARE JACOB’S STORY. ❤️

We desperately need to reach people outside of the same circle of family, friends and incredibly generous people who have already helped us.

Jacob has been fighting for years.

And as his mom, I’m going to keep fighting right beside him.

To everyone who has donated, shared, prayed for Jacob, checked on him or supported our family thank you from the bottom of my heart.

You helped us get Jacob to Mayo twice. You helped us finally get the correct diagnosis after years of searching. And you’ve helped us continue fighting for answers.

Now we need your help getting Jacob back to Mayo again. ❤️

With love and gratitude,

Steffenie