Hi, my name is Persephone, but I go by Perci or PJ! Whether you know me from performing with me, school, crossing paths as children, or we met recently, you know I'm a bit of an eccentric individual. I love musical theatre, as a performer and as a patron. I love movies, TV shows, and first and foremost, books. I grew up bike riding and hiking, sitting in the bottom of a canoe with my dad and camping in Southeast Wisconsin.

I danced, played softball, did gymnastics, the hallmarks of your average active child. I played the trumpet for almost 20 years. Still, throughout my childhood, I suffered from multiple chronic illness symptoms that were never fully investigated.

I was diagnosed as a diabetic in 2012. That year I also discovered my vision had significantly deteriorated with no known cause. I continued to suffer from numerous chronic illness symptoms for the years following: nausea, cyclic vomiting, stomach pain and digestive trouble, lightheadedness, dizziness, low blood pressure, fainting, cluster and migraine headaches, among a few.

When I left for college, I completed 1.5 semesters before going into full DKA. I thought it was a stomach flu but unfortunately, I found myself in the hospital for almost two weeks, nearly dead with a glucose level of 1324 and an A1C of 15. At this same time, I was diagnosed with POTS (postural orthostatic tachycardia), which helped explain a lot of the light-headed dizziness and frequent fainting episodes. I adjusted my regimen and moved forward.

I struggled heavily with my mental health, which affected how I cared for myself.

However, in 2018, in a last-ditch attempt to care for myself and not die, I started going back to my doctors to try to keep myself alive. My vision was worsening and while my hearing was diminished from early childhood, a follow-up appointment revealed a sharp decrease. I was passed around before a geneticist diagnosed me with type 3 Usher syndrome, a genetic condition that causes the loss of vision and hearing and can cause balance issues.

This was a big adjustment to my lifestyle but sadly not where it ends. I was fitted for hearing aids and I moved on. Symptoms come and go but everything stays stagnant. I manage to hold down a job very temporarily.

Fast forward to now. I am married. I have a beautiful daughter. Complicated pregnancy. Complicated delivery, etc. etc. Postpartum is downhill. Hair loss, weight loss, and exhaustion are at an all-time high. I get re-established with my doctors and they are continuing to search for a source of the problem as I waste away. My blood pressure dips so low, it's impossible for home machines to catch. I can't shower at all and cannot bathe alone. I am bed-bound most days and rely on a wheelchair to get around. Standing and walking makes me faint. I'm on IV fluids, injections, and currently receiving tube feeds to try to combat malnutrition.

My husband works full-time and does his best to act as a caretaker, and he does very well when he can. He also does everything he can to help with our daughter but I take care of her the majority of the day. He donates plasma and tries to Instacart on the weekend. We have friends that help out but it's a very big struggle since they have jobs and obligations of their own. We don't qualify for public assistance at all and I'm not legally capable of driving. We make rent but not much more, and bills are piling up. My prescriptions cost up to $100 a month, and my tube feeds were projected to be about $200. This is on top of our monthly expenses: food, gas, rent, car payments, and everything else. My condition has also created an extremely tall hospital bill, so any overflow will help us pay this off as well.

I'm creating this fund in perpetuity to help us with ongoing expenses and our outstanding bills we can't cover with our current income. Your donation will help us cover my monthly formula for my feeding tube, monthly vitamin and medicine injections, and other various medical supplies, like my continuous glucose monitor sensors, needles, supplies for my port and saline infusions, etc. Any excess will go towards outstanding bills we have that are currently overdue, like for the hospital.

******10.31.25*****

updated to give you a better picture, here are some graphics of my diagnoses, allergies, and medications, to give you a better idea on what you'll help support us with