Once an "A " student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I have spent the last couple of years incapacitated, paralyzed, unable to go out of my house to socialize or work, and unable to sit, walk, shower or even eat. I was an active, healthy teenager, until, without any warning, my life as I knew it was ripped away from me by a rare, painful neurological disorder, that has no cure.
Suffering from a disease that ranks higher on the pain scale than Cancer, childbirth, amputation of a digit, etc. Reflex Sympathetic Dystrophy, a poorly understood nerve disease defined by pain in the limbs that is way out of proportion from what is expected following a particular injury or harmful event, such as a surgery or injury; it is a rare, disabling pain disorder in which ordinary sensations such as touch, warmth, and even coolness are perceived as painful. I suffer daily (24/7) from sharp, stabbing, tingling and burning pain; severe headaches; paralysis; intense muscle spasms; dystonia; sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; inability to sweat; swelling; deterioration of bones; decreased hair growth; discoloration of the limbs; and painful skin ulcers. Due to how hypersensitive I am, my parents at times can't even kiss me, I can't wear a sock, I can't sleep with a blanket.
I also, have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. I cannot keep any food or liquids in me, and I vomit constantly. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8. I also require a rare and risky transplant that only 8 hospitals in the country perform, and it also carries the highest rejection rate of all transplants. I need a multivisceral organ transplant, which will encompass receiving a totally new digestive system (new stomach, small and large intestines, pancreas, and liver). Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am 'cured' and able to live my life to the fullest!
I have undergone numerous painful tests, procedures, weekly ketamine infusions, and surgeries. I also currently take over 50 pills to make it through a single day including including Methadone, Morphine, Dilaudid, Nucynta, Ketamine to just name a few. Many doctors have told me that the amount of medications that I am taking would be enough to "kill a horse""”yet they have had little to no effect on me. Even the ketamine infusions are not high enough to benefit me, as the amount of ketamine that I require can only be attained in Mexico because it is not FDA approved. Due to the complexity of my illness, we have to seek the help of top specialists across the country and in Mexico because not many doctors are knowledgeable about my disease and able to help me. We travel to Monterrey in Mexico, Stanford Medical Center in California, John Hopkins in Maryland, Mayo Clinic in Minnesota, Drexel Hospital in Pennsylvania, Florida, and have doctors in the New York area as well.
I am deteriorating so rapidly and time is not on my side. Yet, unfortunately, my illness poses a real financial burden on me and my family and I can no longer pay for my medical expenses without the help of others. I desperately need your HELP in order to receive the lifesaving treatment that I need to overcome this illness. We have a growing stack of bills from very costly insurance premiums, co-pays, procedures, doctors, and traveling expenses. Just the Ketamine Coma alone will cost us over $100,000. My parents try as much as possible to make ends meet, but they have had to take an indefinite leave of absences from their careers in order to provide the vital at-home care needed to help me get me through this ordeal, as well as to take me to the doctors and to get treatments.
I just want to get better so badly. I hate what my life has turned into. My life has really been turned upside down. I am forced to live a life within the 4 walls of my home because I am too ill to go out, my social life is nonexistent, the only thing FUN and I have in common is the "first" letter, and I can't even become the doctor that I always dreamed to be. My parents keep saying that I am beautiful, but I feel like a hideous beast. Between the colorful changes this illness has given me, contractions, and how emaciated I look, I really don't consider myself beautiful anymore. People don't realize how bad I really do look because they don't realize that behind every single picture is a hideous beast, as I end up "touching up" every single picture before allowing it to be posted. Since I am so thin and have literally no muscle tone left in me, my skin just sags on my bones and all you can see are wrinkles and folds throughout my face; a face that should be filled with such youth and vibrance looks like a feeble old lady's. People say that "appearances" don't matter, but I can't tell you how many stares I get or how many people are "chased away" when I change colors or because I look so emaciated.
I only pray that one day I will get my life back. I pray that all my pain and suffering ends. I pray that I get my dream of becoming a doctor fulfilled so that I can help others who are suffering. I pray that I will not be a burden on anyone: especially my family. I pray that I will be able to be "touched" without pain searing through my body. I pray that I will be able to have a family of my own with a husband and kids. I pray that I beat this and lead a long and happy life.
I love life and I have so much to offer the world! However, I fear that further treatments might have to be curtailed, and even possibly stopped, because the cost is just becoming too great. Please help me because even $1 is one less than I have to worry about.
I also need all the SUPPORT and PRAYERS that can be given. It is a huge struggle to go through each and every day, and there are plenty of times that we don't even know if I am going to make it through the day or night. Please spread word of this website because not only do I want to get better so badly, but I want to get the word out about my condition and start awareness! This is the story of a girl who refuses to give up!
Thank you for all your help and support!