am a young mom to 4 children and wife to Joel. After ten years of not having any answers for pain and suffering and decreasing health,
we've been led to a wonderful team of doctors that have given us answers! For which we are incredibly thankful. It's bittersweet, because it was answers we wanted, but not these answers.
have a rather large cyst and tumor in the deepest part of
my brain that will need brain surgery to remove it. Treatment that follows will depend on pathology. There are few neurosurgeons willing or able to do this sort of deep brain surgery. There will be expenses for travel, food, lodging, upfront payments, medications, etc before, during, and after surgery since
I must stay local for quite some time after release from the hospital. There are also expenses to fly in family to help care for
our four kids.
Now that the tumor is pressing on certain areas of
my vision is being affected. Light sensitvity and visual focus has become an issue as
my pupils have become unequal and under-reactive, and at times are even off-center!
I have developed Perinaud's Syndrome which means
no longer have the ability to move my eyes upward. Below, you can see my pupils are not as they should be.
It has caused enough chronic increased intracranial pressure that the fluid
has eroded a hole through a small bone in the brain causing Empty Sella Sac Syndrome with compression on the pituitary gland. This pressure is becoming more frequent and is quite painful and nauseating. I struggle with pain, nausea and vomiting, balance and gait issues, weakness, nerve pain, coordination issues, tremors, myoclonic type muscle type jerks, insomnia, and much more. To make matters more confusing,
I was recently diagnosed with other rare diseases that are loosely related to or at least share connections with the brain tumor. Ehlers Danlos 3, Inappropriate Sinus Tachycardia, Autonomic Nervous System Dysfunction, Chronic Pain, Chronic Fatigue, ....I have a long lists of tests, imaging, treatments, joint bracing, and occupational and physical therpies that are ordered, but I
am unable to have due to expense, even after insurance, that would greatly improve
my health and quality of life. In turn, it would provide a much higher quality of life to the four kids and my husband! Sadly, part of this is genetic and the expenses are great for getting the children seen and treated and in therapies as well! Joel is doing his best to provide for us all and learn and be there as dad, husband, sole provider, and process how this all affects him as well. What a ton to shoulder!
We all have our good days and our bad days. The good days are wonderful and the bad days remind me how wonderful the good days are! We continue to homeschool all our kids and love having them home to help and learn compassion, lots of medical jargon, and just get to be a family together. I know these little cuties are facing a
very different summer than the last, and just want their fun, happy, and active mama back!
Any and all donations will be used
for expenses accrued for medical bills and
treatment or associated with the expenses for travel for medical reasons or accomodations needed at home due to these medical conditions. The financial weight of this is just too much for this family to handle alone.
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