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My Daughter Ginger is a vibrant, philosophical ball of wisdom and love. Watcher of right and wrong, and an amazing person. She has always been quirky, too smart for her age, and unique. Turns out there is more to that than me or her dad Brian anticipated. Overall we have kept our medical journey with Ginger to ourself and a few close friends. We have shared a small glimpse publicly of what Ginger has gone through. We now hope you can help. I'm just now coming out of "survivor mode" and am able to share her story in more detail.
In 2021 when Ginger was 11 years old she woke up to the left side of her body being paralyzed from head to toe. She was unable to walk or stand up. Me being a nurse, I was convinced she had had a stroke! After almost a full month of multiple ER, Dr. visits, testing during the end of the pandemic, she was diagnosed with FND (functional neurological disorder) along with ASD level 2 (Autistic Syndrome Disorder).
At this point I had been a RN since 1994. I always suspected she had Autism for years but I had never heard of FND. Brian had been an EMT, Firefighter and hadn't either. We traveled into this new "normal" quickly learning that not many doctors, had heard of FND, knew what it was, or how to treat FND. The struggle to be heard, to get her evaluated and basic treatment has left me angry and disappointed in my Healthcare community.
Since September 2021, Ginger has lost her ability to walk or stand at any given moment, without any rhyme or reason. Her speech will sometimes slur, she has overall weakness and fatigue. There can be foot or hand tremors, dizziness, loss of memory. Her symptoms interrupt her daily living. She is now in a daily battle with her brain for control of her body. Without FND awareness she was isolated from some of her teachers, classmates and friends who thought she was "just faking it for attention".
FND has been compared to Multiple sclerosis and Parkinson's but without any cause or understanding of how long it will last, occur, progress. Leaving the diagnosed in a state of uncertainty and helplessness that accompanies FND. I will attach links at the bottom for anyone wanting to learn more.
Since her diagnosis, Ginger has undergone multiple tests, therapies, medical visits. As of today she now has 11 medical diagnosis, and 9 medical providers. With half of them providing positive experiences and plans of care. We don't talk about the other half.
I had insurance and a small savings, but the REAL irony, is that being nurse I had really HIGH copays and deductibles. I had even changed to the expensive "premier insurance plan" along with the maximum allotment to FSA/HSA. I had hoped the insurance change would cover more of her care since her medical bills had now reached over 10K for my "out of pocket amount".
At that time, no one was concerned over the costs since it was our daughter. I had a great job. Her dad was happily remarried and was in a stable financial position. I had no doubt that with Brian's help we could pay it all off later.
Then, unfortunately I lost my remote Nursing position in July of 2023. Brian placed her on his insurance. He has continued to help financially while continuing to be a supportive and present father. I was now collecting unemployment for the first time and I was able to dedicate all of my energy and time solely to Ginger and her needs. It allowed me to fill out applications and get her either enrolled or on wait lists for State and Federal Programs to assist her now and as she becomes and adult. You know, government, this was and is a very confusing, lengthy process without much clarification or help. She now has Medicaid/CHIP and we FINALLY got her wheelchair over a year later.
Ginger evolved into a warrior and a role model, remaining positive throughout all the challenges. We wish she didn't have to learn that at age 11 though. She is now enrolled in online public School since it accommodates her Medical needs. (don't get me started on AISD). Ginger requires 24/7 availability and care from a caregiver. Which means I can no longer work full time and give my daughter what she needs.
This leaves me hanging. Remote nursing positions require you to be completely in front of your computer/ phone and aren't very flexible with your schedule or family needs. (oh the irony here). Thankfully after unemployment ended, my neighbor offered me a job. It is 1/3 what I made with a 29 year career of being a nurse but allows me to be home. I'm able to go to Gingers appointments without question and I'm provided full support and encouragement to have a work life balance. I am aware that this opportunity is rare and special.
With that said, Brian and myself realize that we will never be able to come out from under Gingers now $14,000 medical debt. We tossed around having a fundraiser/FND awareness show with a silent auction. With our killer friends with amazing talents thatwould have been the most fantastical reunion/bash EVER!
Then in Early February I fell (shocker) tearing the 2 ankle ligaments that attach my fibula, outer leg bone, to my ankle. Also, if you haven't heard, Brian and his wife Marie are welcoming a new addition to their family, and a new sibling for Ginger any day now. With these two major events we realized that our plans weren't feasable. Which leads us to now.
If you know me, you know that I HATE asking for help, let alone financial help. Creating this account, reliving the events, disappointments and changes every single thought I ever had about being a nurse and parent. It has made me change my view, identity and washed away everything I thought I knew. With Ginger JUST now.. as of yesterday.. meeting the over $1300 out of pocket copays for this year with Brians insurance..Is she now getting Medicaid/CHIP secondary insurance. Her medical "should" be covered 100% from today forward.
That leaves myself and Brian with $14, 000 to pay. We need help from our friends and anyone else with a kind heart. I will never be able to pay it and with Brian having the new baby coming; I don't want them to have this worry along with the responsibilities of a newborn.
We both understand that we don't run in the millionaire circle of friends, and we 100% understand that if you help it is all that you are able to give. We fully understand the saying "It takes a village to raise a child" and if this has reached you and you've made it to reading this far...Thank you!
YOU are our family's village!
The following links are for those that want to learn more about FND, so we can raise awareness. The UK is the only country that has defined medical care plans in place for their medical community to follow. In Austin we have hit so many roadblocks with her healthcare team not knowing, believing, or caring on what to do. This seems to be a shared experience from the FND support groups as well.
Studies have shown a change in the grey matter and amygdala of FND patients. I also want to mention that just this month they released AMAZING brain images with the most powerful MRI machine made. The images are insane! Who knows, maybe one day you will see me or Ginger on Capital Hill being advocates for healthcare awareness and change.
FND explained:
Clip of people with FND stating its impact on their life:
New Powerful MRI machine:
Again, thank you, anything helps.
If an unexpected miracle occurs and donations go above the goal of current debt. The extra donations/ funds will go towards medical devices to assist Ginger with home Physical Therapy.