Chloe's Abdominal Vascular Compression Journey

Hi, I am raising money for my daughter's next major surgery and treatment. We previously raised money last Fall 2022 for her renal autotransplant surgery, for which we are forever grateful. However, we are needing to travel to Omaha, Nebraska multiple times this year, due to needing the intestinal rehabilitation program there. Her intestines are no longer working properly and therefore she is not able to gain proper nutrition without the use of an enteral (NJ tube) and parental (TPN) feeds.

She has AVCS (abdominal vascular compression syndromes), which are labeled rare but often misdiagnosed. She also has EDS (Ehlers-Danlos), a connective tissue disorder thought to be linked to these vascular compressions. Unfortunately, not a lot of doctors are educated on AVCS. There are five abdominal vascular compressions, and slowly she was diagnosed with more until now, and she has 6 (MALS, SMAS, NCS, MTS, PCS, nTOS). Her organs are not getting proper blood flow, severely affecting her ability to eat and drink normally. Poor and little nutrition for four years equates to a long list of diagnoses that haven’t improved with treatments and have only worsened as time passes. Unfortunately, no single surgeon in the United States can perform surgery to fix them all simultaneously. We have traveled quite a bit this last year, meeting with the few that can operate here in the United States. Chloe will be 19 soon and has been sick since her 15th birthday and cannot drive, go to school, work, enjoy activities, or leave the house most of the time. She spends her days taking medications and doctor’s appointments or labs. Chloe had surgery for MALS (median arcuate ligament syndrome) in July 2020 and had six months of relief. She then became sick again and had surgery for SMAS (superior mesenteric artery syndrome) in August 2021. Within 30 days, she was back in the hospital for a Nutcracker Syndrome diagnosis, followed by a May Thurner diagnosis in November 2021. We traveled to Colorado in September 2022 for renal autotransplant surgery and a stent for pelvic congestion. We were in Colorado for 8 weeks, due to complications from her surgery. She had a stent placed in March 2023 for her May-Thurner syndrome. She is still in the process of making a plan for the treatment of her thoracic outlet syndrome, but luckily we have a great surgeon locally who can treat her.

Chloe is still young and wants a chance to go somewhere that can help her gain back a better quality of life. As you can imagine, being sick for four years, as well as constantly traveling to find specialists who understand how to fix these compressions, has added to our medical debt, as well as time missed from work, and the travel expenses of hotels, uber, food, gas and plane tickets. Any help will be greatly appreciated to ease some of the financial burdens. I appreciate your support.