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Jacob needs urgent, life-saving medical evaluation at Mayo Clinic. Without this March visit and comprehensive testing, we cannot move forward with the lung transplant process that may be necessary for his survival.
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 slip away without answers. During that time, he has lost nearly 60 pounds, grown progressively weaker, and struggled with constant fatigue and muscle weakness. No matter how many doctors we saw, no one could 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, in November of last year, everything changed.
Jacob began having serious breathing problems and chest discomfort. We were terrified. At OHSU, he underwent extensive testing, including a lung biopsy. We were told the biopsy looked normal and that it appeared he had 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 breathing continued to worsen.
As a mother, something in my gut told me we were missing something critical.
That’s when we sought a second opinion at Mayo Clinic.
At Mayo, doctors took a deeper look at Jacob’s case. 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. The goal right now is to keep him as stable as possible, because if his lung function declines further, a lung transplant may become his only chance for survival.
Jacob’s care is extremely complex. He is currently followed by:
• Pulmonology for his lung disease
• Neurology for POTS, which affects his nervous system and blood flow
• Cardiology due to concerning heart rate changes since his lung biopsy
• Gastroenterology to determine why he continues to lose weight he’s is now only a 107 lbs
In March, Jacob must return to Mayo Clinic for an in-person, multi-specialty evaluation. This visit is critical. It is the step needed to fully understand all underlying issues and determine whether we can begin the lung transplant evaluation process. Without completing this testing, we cannot move forward.
Because of how fragile Jacob’s lungs are, he cannot fly. We must drive two days each way to get him safely to Mayo. His visit includes four full days of on-site testing and appointments, followed by the long drive home.
Our January Mayo visit had to be postponed to mid-March due to dangerous winter conditions. In the meantime, we have been doing virtual appointments with Mayo and local in-person care while closely monitoring Jacob’s weight and overall stability. Waiting and watching has been incredibly nerve-wracking as a parent.
Even with a Mayo lodging discount, the cost of staying near the hospital during this time of year is nearly triple what it was during our last visit. The financial strain has become overwhelming.
I have also had to stop working to care for Jacob full-time. His needs are constant, and my focus has to be on keeping him safe, stable, and getting him the care that could save his life.
As a mom, no one prepares you for loving your child this fiercely while watching them struggle just to breathe. Jacob is kind, gentle, and incredibly strong even on days when his body is failing him. He deserves a future, and I will do everything in my power to fight for it.
Funds raised through this campaign help cover:
• Medical travel to and from Mayo Clinic
• Lodging during extended Mayo visits
• Food and daily living expenses
• Medications and medical needs
• Loss of income while caring for Jacob
If you are able to donate or share Jacob’s story, it truly means more than I can express. If you are unable to donate, your kindness, prayers, and support are still deeply felt.
Thank you for taking the time to read about my son and for standing with our family during the hardest chapter of our lives.
With love and gratitude,
Steffenie
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 slip away without answers. During that time, he has lost nearly 60 pounds, grown progressively weaker, and struggled with constant fatigue and muscle weakness. No matter how many doctors we saw, no one could 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, in November of last year, everything changed.
Jacob began having serious breathing problems and chest discomfort. We were terrified. At OHSU, he underwent extensive testing, including a lung biopsy. We were told the biopsy looked normal and that it appeared he had 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 breathing continued to worsen.
As a mother, something in my gut told me we were missing something critical.
That’s when we sought a second opinion at Mayo Clinic.
At Mayo, doctors took a deeper look at Jacob’s case. 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. The goal right now is to keep him as stable as possible, because if his lung function declines further, a lung transplant may become his only chance for survival.
Jacob’s care is extremely complex. He is currently followed by:
• Pulmonology for his lung disease
• Neurology for POTS, which affects his nervous system and blood flow
• Cardiology due to concerning heart rate changes since his lung biopsy
• Gastroenterology to determine why he continues to lose weight he’s is now only a 107 lbs
In March, Jacob must return to Mayo Clinic for an in-person, multi-specialty evaluation. This visit is critical. It is the step needed to fully understand all underlying issues and determine whether we can begin the lung transplant evaluation process. Without completing this testing, we cannot move forward.
Because of how fragile Jacob’s lungs are, he cannot fly. We must drive two days each way to get him safely to Mayo. His visit includes four full days of on-site testing and appointments, followed by the long drive home.
Our January Mayo visit had to be postponed to mid-March due to dangerous winter conditions. In the meantime, we have been doing virtual appointments with Mayo and local in-person care while closely monitoring Jacob’s weight and overall stability. Waiting and watching has been incredibly nerve-wracking as a parent.
Even with a Mayo lodging discount, the cost of staying near the hospital during this time of year is nearly triple what it was during our last visit. The financial strain has become overwhelming.
I have also had to stop working to care for Jacob full-time. His needs are constant, and my focus has to be on keeping him safe, stable, and getting him the care that could save his life.
As a mom, no one prepares you for loving your child this fiercely while watching them struggle just to breathe. Jacob is kind, gentle, and incredibly strong even on days when his body is failing him. He deserves a future, and I will do everything in my power to fight for it.
Funds raised through this campaign help cover:
• Medical travel to and from Mayo Clinic
• Lodging during extended Mayo visits
• Food and daily living expenses
• Medications and medical needs
• Loss of income while caring for Jacob
If you are able to donate or share Jacob’s story, it truly means more than I can express. If you are unable to donate, your kindness, prayers, and support are still deeply felt.
Thank you for taking the time to read about my son and for standing with our family during the hardest chapter of our lives.
With love and gratitude,
Steffenie
Organizer
