Jacie is my 14 year old daughter, and one of my biggest blessings. She has a number of medical diagnoses. Just to name a few, she has: Spina Bifida, hydrocephalus, Chari Malformation ll, scoliosis, a neurogenic bladder and bowel, and is in stage 3 Chronic Kidney Disease. She has endured more than 30+ procedures. She has the most wonderful sense of humor and her kindness knows no bounds. She has the kind of soul this world could use more of and she is loved deeply.

UPDATE: Jacie is finally back home. She is working hard everyday to recover and gain her strength back. She is now requiring a number of new medical devices and an increase of medications. We’ve spoken with urology and nephrology who both say as soon as Jacie is well enough she will need a procedure called Mitrofanoff. This is a procedure that essentially creates a new channel for her urine to drain from her body. I was thrown aback when our pediatric urologist/surgeon, who is the head of that department, at OSF Children’s Hospital of Illinois said that we may have to travel for this specific procedure. With her medical complexity, she would need a much larger team who specializes with cases like these. That absolutely terrifies me. OSF has saved my girls life more times than I can count, so being told that the risks are so high they want to be safe and send her to a completely different facility makes me sick to my stomach. I’m not sure when this will take place. Our first priority is to allow her time to gain her strength back so she can be strong enough to withstand this surgery. I will do my best to keep updating as I gain new information. For right now we work on getting her back to her baseline.

Our family had been in the hospital for 25 long days as my daughter fights through serious medical complications. What started as a fever turned into multiple tests, scans, and countless sleepless nights filled with worry. She has endured painful procedures, infections, and setbacks, but through it all, she’s shown incredible strength and courage.

While she fights for her health, we are struggling to keep up with the growing medical expenses and everyday bills at home. We’ve had to step away from work to be by her side, and the financial stress is overwhelming.

We’re asking for help — whether it’s through donations or simply sharing our story — so we can focus on what matters most: helping my girl heal and bringing her home. The fight doesn’t stop there. Jacie will need a plethora of new medical equipment/devices for the remainder of her life. Every gift, big or small, brings us one step closer to easing this burden and giving her the care she needs.