Isabel's compression surgery in Germany

https://wcyb.com/news/local/church-hill-woman-battling-rare-disorder

https://www.wjhl.com/news/local/church-hill-woman-raising-funds-for-life-saving-surgery-in-germany-not-offered-in-u-s/

https://www.timesnews.net/news/church-hill-woman-to-be-treated-for-rare-disease-in-germany/article_ccc6e9de-bcf8-11ec-9161-8f2d53c697e6.html

 

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Isabel was a healthy, active 16 year old, an excellent student, and an avid horseback rider. After a bout with the flu and a car accident, that seemingly only caused her some lower back pain, her health slowly diminished.  She had a small bowel ileus six weeks after the accident and slowly lost her appetite over the next seven months to the point that she couldn’t even drink a few sips of water.  She was plagued with constant fatigue and wide variety of pain.  Her stomach and colon became paralyzed causing intestinal bile to back into her stomach. Despite surgeries there have been little to no improvements.  She battles constant headaches/migraines, temperature dysregulation, blurry vision, extreme nausea and abdominal pain, dizziness, brain fog, insomnia, severe reactions to smells/medications/heat & cold/adhesives/dyes, nerve pain, swelling, distention, no hunger cues, extreme weight loss and malabsorption.  We have been to top research hospitals and seen the most qualified specialists to be told she is simply too far ahead of the science.  We’ve also encountered some of the worst medical “professionals” that tend to blame psychological difficulties rather than admit their gap in knowledge. She has two feeding tubes in her stomach and intestine, a central line for IV medications and TPN (IV nutrition), takes numerous medications through these devices, and still suffers tremendously every minute of every day.  She cannot drive, go to school, work, enjoy any activities, or leave the house most of the time.  She spends her days taking medications, caring for her tubes and lines, and doctor’s appointments or labs.  

Through continuous research we finally found a vascular surgeon that could explain what no one else could.  Isabel has hypermobile Ehler's Danlos Syndrome, or loose connective tissue, that has caused multiple vascular compression syndromes that simultaneously impact the nervous, circulatory, digestive, and renal systems. She had one compression, MALS,  surgically repaired in 2018 but we did not know that the loose connective tissue can cause organs to sag and to have multiple compressions.  Basically her organs are not getting proper blood flow and it’s severely affecting her ability to eat and drink normally.  Poor and little nutrition for five years equates to a long list of diagnoses that haven’t improved with treatments, and have only worsened as time passes.  The root problem is not being addressed.  

The United States does not have the technology available to diagnose these compression issues or a surgeon that can repair everything at once. German doctors are years ahead of physicians in the US and have the appropriate testing and surgeon that can repair any sagging visceral organs and vascular compressions.  Our only hope to restore Isabel’s health is to take her to Leipzig, Germany, for testing and Dusseldorf for surgery as soon as possible.  She is severely underweight, and with IV nutrition, we hope she will gain enough by July 7th to endure a grueling surgical recovery.  

All medical expenses will be out of pocket, and we would be very grateful for any help possible. Diagnostic, surgical, and hospital costs are estimated to be $80,000, and our cost for travel and staying in Germany for 6-8 weeks is $20,000. Please consider helping us provide this life-changing surgery for Isabel and thank you for your generous prayers.  We couldn’t have gotten through the past five years without our army of angels!

Blessings~ Trina

For those interested, the vascular compressions causing poor blood flow to organs can lead to many illnesses.  Izzy has been affected with

* POTS (postural orthostatic tachycardia syndrome) / Dysautonomia
* Mast cell activation syndrome
* Small fiber neuropathy
* Adrenal insufficiency
* Hypothyroidism
* Chronic anemia
* Gastroparesis
* Colonic inertia
* Malabsorption of nutrients
* Chronic fatigue syndrome