Hope for Lily

Friends and Family,

Some of you know that Lily has been sick and others have not heard. It is time to update everyone. Lily got sick with Flu B at the end of January and has never recovered. The Flu hit her pretty hard and after the 10th day she started to pick up very different symptoms that include extreme tiredness, headaches, confusion, loss of focus, memory loss, high high anxiety and even hallucinations. I took her back to our primary doctor several times- they ran her bloodwork, told me everything was normal and that I should treat her for the anxiety and see a psychologist. I did not agree and my gut was screaming that something was wrong. I asked for an MRI and CT scan, to which my primary advised that it would be too invasive for a problem that was most likely a brain chemical issue. I decided to take her to a functional medical doctor for a second opinion. We found an amazing nurse practitioner who practices functional medicine. She was booked out 8 weeks solid, but heard about Lily and came in on her day off that week to see her. She has run every blood test, stool test, swabs, bioenergetic scans and ordered an MRI. The MRI showed that the right side of Lily's brain is very inflamed and the left side is showing lower than normal fluid levels. This confirmed the Dr's diagnosis of 'PANS'. You can look it up, but basically its an autoimmune disorder in her brain. The blood work also showed that Lily has Lyme disease. Poor things body is freaking out and her brain is essentially on fire. This is wreaking all sorts of havoc on her and her body. She is not herself and very stressed, and sad. Right now we are gluten free, no processed sugars and all organic. We have to keep her calm and not stressed. We have hyperbaric oxygen treatments daily along with weekly FSM treatments. As soon as we finish her liver detox the dr will begin to treat her for the Lyme disease. We are still waiting on the Cunninham panel results to show what markers are up in her brain and what she needs to treat to get her better. She is still in there, we see glimpses of her everyday. Dr. believes she will be back to normal, just depends on how she responds to all the treatment. She is currently on medical homebound status from school and all softball has been stopped.

This has been very hard on all of us but we are all fighting with everything we have. It is taking a financial, emotional and physical toll on our family. Everyone has offered to help with anything we need and to that we say yes. Yes to it all. There has been so much so fast that we can barely keep up. We are exhausted. My daily prayer is that what we need each day will be provided and to show us what we need to do for Lily. So far that prayer has been answered. We are so thankful for the support and love we have received so far.

Lily has not responded to one text or message on social media in over a month. She has not posted anything online either. I think she is embarrassed/ self conscious of what is going on, and some days I don't know if she even knows what is going on at all. Please let everyone know that her silence is not on purpose. She needs all the love, prayers and support she can get.

I will update when we have more information. Please share this with anyone who might want to know where Lily has been the last month.

All funds will be used to support the Kucmerowski family during this difficult time. Lily's treatment is not covered by insurance and the special diet has added significant expense.