Mayo Clinic for Glen or bust: April 1, 2019
Update: The AeroAngel flight that was to take Glen to Mayo had a hydraulic leak in the struts that delayed our trip by a week. We scrambled to find another way to travel and decided that getting him there as stress-free as possible would leave him in a better place to face what the week at Mayo will bring. We can't thank you all enough for the support you have shown us!
One thing I’ve learned about chronic autoimmune disease is that it’s chronic. Typically, people who suffer from Inflammatory Bowel Disease (IBD) have periods of relative peace, then have a flare up of their disease which they can often manage through changes in diet or medication.
I have watched my son battle this disease for eight years since his diagnosis of ulcerative colitis (UC) during his senior year of high school. It has been relentless. When specialists say, “We haven’t used all the bullets in our gun,” what do you do when they have? The gold standard of immunosuppression used in gastroenterology has failed in every conceivable (and frightening) combination and actually made the symptoms worse.
Who is Glen?
My hero. He’s now 25 years old and has calmly and stoically accepted the pain and humiliation of this disease and its treatment during what should have been the best years of his life. He’s swallowed every pill, tolerated every poke, and accepted lengthy chemo infusions, surgeries, and hospital stays. We can no longer hope that the next drug will produce a different outcome.
Unusual history
Human genome mapping has started to change the way we approach disease. Glen has defective methylation genes which should be managing a critical metabolic function. Methylation happens billions of times in every cell and regulates healing, cell energy, genetic expression of DNA, liver detoxification, immunity and neurology.
This defect explains why he was the hardest hit in our family by our long-term exposure to black mold (stachybotrys) and other neurotoxins in our home. He had asthma and open sores on his body. Surgeons removed his tonsils and adenoids because he suffered from sleep apnea, and it took several years until men in hazmat suits put our house under containment and remediated the mold. Doctors were ill-prepared to treat for mold illness so he received no testing or treatment. He suffered ongoing allergies despite allergy shots and a few anaphylactic episodes until finally being diagnosed with UC in high school.
Why Mayo Clinic?
We have made appeals to researchers and specialists throughout the world and feel that Mayo has the best minds, tools, and multi-disciplinary approach at their disposal to finally put the puzzle pieces together and figure out why his UC has been refractory. When disease doesn’t respond to Western medicine, it is refractory. It can also be deadly. Glenn Frey of the Eagles died of acute ulcerative colitis and there is nothing benign about a bleeding, ulcerating colon and constant diarrhea.
Many alternative treatments–although sound in theory–have also failed as they are approaching “typical” IBD and inflammation. A dear friend created a GoFundMe three years ago that helped us attempt one of these promising, but sadly ineffective treatments.
This feels like a chance to plead Glen’s case to the highest court.
I have watched Glen struggle for 20 years, not just 8. I trust that the Mayo Clinic will get us in front of compassionate doctors who understand that his medical history involves more than just what is happening to his colon.
Glen has been on disability and I’m not sure how much Medicare or his secondary insurance coverage will help at Mayo. Our first appointment is March 25. We’ve hit a wall physically, mentally, and financially and this feels like our last chance. Thank you for reading this, for holding us in your thoughts, and for anything you can contribute to help get Glen back into life.