Help Ashley become Healthy

Hi my name is Ashley Dayan. I am 16 years old almost 17, I'm reaching out because I have been suffering with a life threatening disease for the past 2 years. I was a perfectly healthy child growing up but I did have migraines and some stomach problems but nothing serious. In November of 2016 I was diagnosed with autoimmune autonomic galionopathy w/ small fiber neuropathy a extremely rare form of dysautomia. This condition affects me in every way. Your autonomic nervous system affects everything your body does automatically which in that aspect it affects my vision to the point where I can barely see and I have constant double vision. It also affects my heart causing POTS which makes me pass out all the time, my blood pressure is up and down all the time but it also causes heart palpitations, etc. The 3 most important parts that it affects are my digestive system, brain, and ability to walk due to weakness and muscle decay. My entire digestive system does not work. I can eat food but it comes up the same way I ate it, I have a tube in my intestines for nutrition but my body does not absorb that. I was on iv nutrition for a while to make my body be able to function. I have problemso with my bowel and bladder. I also have a G tube that I drain so I don't throw up. This condition affects my brain by coordination, ability to remember and think, speech problems, weakness and numbness, and lastly It has caused me to have epilepsy that include tremors, twitching and rolling of the eyes. The most recent but awful part is my ability to walk. This condition has caused me severe neuropathic pain, muscle and joint pain, and arthritis. This pain is chronic and debilitating which has left me crying every day, pain by a simple touch, awful migraines triggered by anything and everything and my ability to function as a 16 year old. I can't attend school, get a job, stand for long, go out with my friends, etc. This condition first starting out when I went to Costa Rica the day of I felt awful and kept throwing up. While I was there I got food poisoning and for 2 weeks after I was fine. Suddenly the symptoms started first with occasional throwing up what I ate and then within a week it got to full blown out not keep anything down. I spent over 100 days in the hospital last year missing out on school,friends and family. I got every test possible, was put on every medication possible and started getting feeding tubes which I could not even handle in my intestines. I kept going back to the hospital, going to see 20 doctors just to find a answer and no one had one. Now I have a port for hydration which helps me have energy by getting 3,000 liters of saline. I also have a G tube and a surgical J tube for feeds. These 2 are separate because the the G-J kept reversing. The surgical J tube left me in the PICU for 4 Days due to the pain and my inability to breathe. I have had many surgeries and none have helped. Unfortunately all the doctors at Johns Hopkins said it was out of these scope and suggested seeing a doctor out of Maryland. I ended up getting rejected from 2 hospitals out of 3 in the US because they said it was to many parts of my body. I ended up seeing a doctor at Standford Medical Center which he recommended Biopsys which showed positive for nerve damage but he didn't know the cause. He is the one who diagnosed me but we are still unsure if this is the right diagnosis. He recommended IVIG which make me worse. All though with this we could still not find an answer or any treatment thus we still are stuck trying to find a way to deal with my pain. Now I am left with the only option of Plasmaphoris and medical methodone/pca pump for pain which is hard to find a doctor for due to my age.
These past 2 years have put my family in pain and left my mom looking for anyone or anything that could maybe help. My mom is a single parent barely working because of all the doctor appointments she has to take me to. I am on about 20+ medications to keep me functioning and that is the only way that I can live an okay life as of right now. Please if you know anyone or are a doctor or have any suggestions please reach out. Anything will help this debilitating disease. This condition has made me feel hopeless over time and lonely given how much I have lost. Traveling to see my dad in Israel is not possible and traveling was my favorite thing. Normal things like cooking, eating, being with friends, attending school/college, and living life was taken from me. I have always been a giving person and have always wanted to be a PICU doctor so please help me reach my dream and goals! Please help me and my family find a answer. Though this awful disease I have grown to appreciate every moment of life. This condition is not the only thing that has made life hard but it exacerbates those issues too. Everything is greatly appreciated!!! Please reach out if you have any questions or any thoughts or know someone who can help! Anything is greatly appreciated. We started a Go Fund Me due to the overwhelming medical bills to see private doctors (who charge hundreds of dollars an hour) and to afford treatments that are not covered by insurance. At this point my mom is barely making income due to all the time she needs to take off of work for me. Any donations no matter how much is greatly appreciated. Please help me find a answer and live a healthy life. Every penny means a step closer to finding someone or something that can help! Thank you all!