Mylin’s Angry Pancreas

Hey! Thanks for popping over, and supporting us! I wanted to start updates somewhere that our support system could keep up with them without being on social media. The first handful of posts will be ones backdated from the past month that I have begun sharing on social media. I will attach the dates they were written with each post.

04/28/2026.
As we begin our journey towards a hopeful next step, the TPIAT surgery, we wanted to share it with all of you. One of the main reasons believed to be cause of Mylin’s illness is a very rare CTRC gene mutation that causes the pancreas to eat itself. There is also some evidence of possible autoimmune pancreatitis. Mylin is an absolute abnormal case, and has baffled the doctors from the very start. Their labs never told the story of what was happening internally. Also, they have symptoms that are high qualifiers of one kind of the disease, but then ones that don’t fit. It’s been hard, frustrating, sad, exhausting, and so many other things..

Pancreatitis is one of the absolute most painful diseases there is, and it horrific watching your child be one of the unlucky few to be in its wake. We continue to advocate and push for My in hopes of a somewhat normal life free from pain. Currently most of their days are spent in bed when not in school, some days they’re too sick to go, and on the rare occasion we’ll have a good day where they have energy and are able to eat without pain or nausea. Though, the latter are more rare.