Our 15 year old daughter's health has been rapidly declining. As we have pushed for answers, gone to countless appointments, and fought for testing, Allison has been suffering. There isn't a day that goes by that she is not in pain. With her positive personality and beautiful smile, you'd hardly know the daunting number she is at on the pain scale.
This fall she started using a wheelchair and this winter she was mostly bedbound. She got to a point where she had to demand a feeding tube because she could no longer take in solids or fluids without horrible pain and extreme nausea that lasted for hours. These episodes occured by simply taking a sip of water. She endured this for months. We felt like we were drowning, but the feeding tube that goes down her nose and into her small intestines has been able to allow us all to come up for some air and strengthen her body before we head back into even deeper water.
So far we know Allison has postural orthostatic tachycardia syndrome, hypermobility spectrum disorder, gastroparesis and four vascular compressions. Her connective tissue disorder has likely caused the compressions and it's possible that her compressions are causing her POTS and partially paralyzed stomach (this damage may never be fixed, along with her extreme nerve pain). The compressions affect the body's ability to function in many, many ways and they bring on beyond debilitating symptoms.
We have exhausted resources here for her and have been met with so much inexperience ...almost medical abuse... that it's crucial we seek a true specialist that has decades of knowledge on how these conditions are intertwined (we weren't sure one existed).
With Median Arcuate Ligament Syndrome, Nutcracker Syndrome, May Thurner syndrome, and Superior Mesenteric Artery Syndrome, Allison needs to go to Germany. In the United States, there are few who understand these rare conditions and typically specialists will only address them one at a time, which could be very dangerous in Allison's case. She will need testing in Leipzig and then open surgery in Duesseldorf. Our beautiful baby will be cut down her entire abdomen. Surgery will be long. It will require weeks in the hospital and additional weeks of care at separate lodging so she can be monitored before we prepare her for the journey home. This is not something we can do alone. Costs are all out of pocket. We are scared, but desperate. Allison has four younger siblings we have to leave behind, which feels impossible, but it's not a question... Allie is an amazing girl who is worthy of living.