Help Me Get My Life Back ( Rare Chronic Illness)

Hi my name is Ryan Maloy. I am currently 22 years old and have been suffering from a very rare disease called autonomic autoimmune gangliopathy for the past 7 years of my life. AAG has completely altered my life and has made everyday things like simply getting out of bed a huge task. AAG is a progressive disease which means that symptoms will continue to get worse as well as the quality of my life. Everyday is an uphill battle. This disease causes extreme gastrointestinal pain, a wide range of neurological complications, autonomic failure as well as many other debilitating symptoms. I cannot go a day without vomiting. I cannot go a day without debilitating stomach pain. I cannot go a day without every nerve, joint, and muscle in my body aching in pain. I cannot go a day without severe and overwhelming fatigue and massive brain fog. Every time I stand up I have to worry about passing out due to the severe orthostatic hypertension. Without treatment I may be completely bed bound in another year if the disease keeps progressing at the rate it has been. It is estimated that there are only about 200 people worldwide that has been diagnosed with AAG. Unfortunately, this means there is no standardized treatment. However, many clinical trials and patient success stories have shown that IVIG and plasmapheresis work very well in the treatment of AAG. Sadly, since it is so rare, no insurance companies will cover the cost of the treatment. Even rare disease associations will not help with the funding since even they have never heard of it. Words cannot describe how frustrating it is knowing that there is something out there that could help me get my life back but it is not affordable. I have so many dreams and goals that I want to accomplish in my life, and seeing myself slowly waste away due to chronic illness is heartbreaking. I want to get my degree and go to med school. I want to aid in curing MS and Alzheimer's. I want to be able to go to the gym and be with my friends and family. I want my life back. I have fought and fought and fought for so long. I have pushed through so many things and continued to do my absolute best in whatever I was doing. AAG does not define me and it never will.

Words cannot describe how thankful and grateful I would be if anyone could donate even if it is only one dollar. It is estimated that plasmapheresis will cost roughly 130 thousand dollars. Any amount you can donate will help me so much. I really need your help. Thankyou so much!