Hello, my name is Jazmin. You may also know me as Layla Noir, if we've met through the bass music scene. If you haven't noticed, I have taken a step back from going to shows and performing as I've been going through lots of setbacks with my health. Over the past year and a half, I have met with multiple doctors and specialists due to unexplained weight loss, and muscle weakness. Around this time last year my weight had gone down too 96 pounds, a weight that my body hasn't been since I was in the 6th grade. My days went from traveling often, going to multiple shows and festivals, being strong from years of dancing, competitive swimming and running track, to now struggling to even walk up a flight of stairs. Every step I take today I'm constantly worried my body is just going to collapse. Nothing changed with my diet; I just watched my body slowly start to deteriorate. With concern of possibly having increased inflammation in my body due to an autoimmune disease, we began prescription immunosuppressants in combination with a steroid before going in with a baseline workup that included an EMG and muscle biopsy. I spent this past Thanksgiving at home recovering from said muscle biopsy, which removed a thick tissue sample from my thigh. The sample showed findings of a buildup of an enzyme, and death of muscle tissue among other nonspecific findings. These results lead my Neurologist to suspicion of a genetic condition; we ran testing that after a few weeks led to a final diagnosis of a very rare genetic disorder labeled as Late Onset Glycogen Storage Disease Type II; Pompe Disease. Which in short is a disease where the body is unable to break down glycogen in order to use it properly in the body, which leads to a buildup of enzyme that cause muscle wasting/death. Most cases seen occur in children and unfortunately do not thrive. For late onset, the ONLY effective treatment that is enzyme-replacement therapy every 2 weeks. With it being a newly introduced treatment by the FDA, it is still in very early stages with getting insurance on board with coverage. The cost of each infusion for me is 15k, however after insurance the stated cost so far is roughly 5k. Unfortunately, without receiving this treatment, my prognosis is looking short. I'm still paying off the thousands in medical bills from all of the diagnostics and surgery I've done the past 6 months. I live by myself with three little ones so I'm just trying to stay afloat the best I can. This is not something I ever imagined myself going through, any support and assistance in helping me start the treatment I need would be so greatly appreciated, and if you are unable to donate, please share with friends and family. Would mean the world to me. Thank you!