Support Lily's Brain Surgery!

Hi everyone! My name is LilyEvangeline, I am a Chiari malformation warrior. I’m here because I need some help covering basic medical care costs. Essentially having a Chiari malformation means my brain is too big for my skull, and it’s crushing my spinal cord. I need to have brain surgery. For my entire life I’ve been battling chiari malformation symptoms, but didn't get diagnosed until 2020 at age 25. As a child I woke up every single day with headaches. As I grew older my symptoms progressed. I started having convulsive episodes when I was around 12 for a few years, those would seem to fade away until I got much older. Around the age of 19 I started to lose feeling in my left leg, starting out sporadic but quickly became permanent, forcing me to relearn how to walk.

Fast forward a few years to March of 2020 at the beginning of the pandemic I was working as a teacher in St. Paul,MN. As the pandemic hit, my school decided to close for two weeks. Two days after my school made this decision I ended up having 3 severe seizures in the middle of the night while living alone. The following week my school decided to close permanently. Because I was unable to care for myself I eventually moved up north to Grand Rapids MN where my parents live. Before those seizures I would have migraines for multiple days on end, sometimes over 20 days. After experiencing those seizures, I had constant head pain and nausea, dizziness, weakness in my legs, and tinnitus. As time went on I was recovering from my TBI from my seizures, but I was still experiencing pretty severe symptoms, as well as other new symptoms. I haven’t been able to feel my left leg very well for about 8 years now, however I’ve lost feeling in my other leg as well now. I’m experiencing numbness and tingling in my arms and hands as well. Chiari malformation is incredibly hard to diagnose and can take years to diagnose. Because of my brain injury from my seizures my Chiari malformation symptoms have become much more severe.

With my symptoms being progressive that puts me at much higher risk for having permanent nerve damage. At that point there is nothing we can do as far as treatment or care, so this surgery needs to happen soon. I will also be required to go through physical therapy after my surgery as they will be cutting through deep neck muscles. Recovery from a Posterior Fossa Decompression surgery is very long. It will take about 3 months after my surgery for me to be able to sit comfortably in a chair and not feel as though I've just gone through surgery.

Through all of these years and medical testings I’ve accrued a substantial amount of medical debt. Since my insurance is through the county that I live in, and there are no neurosurgeons in this county, there are no neurosurgeons covered through my insurance. Your donations will be going directly to helping me pay off my medical debt, and towards paying for my Posterior Fossa Decompression surgery, happening December 13, 2022.

Thank you so much for taking the time to learn about my medical history and my story!! Spreading awareness about the Chiari malformation condition is so important to me. I hope you consider donating and keeping along with my story on my Instagram at @studio_evangline