HOPE for FALLON

 
Raised: $24,520.00
Goal: $100,000.00
 
 
 

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Fallon Mirsky

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HOMEPAGE AND BLOG: HTTP://FallonMirsky.wordpress.com Please help me become the 38th patient to undergo a radical Ketamine Coma in Mexico and help me regain my life!  In 2001, I was diag... more

 
 
 
 
 
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Updated posted by Fallon Mirsky 1 day ago

April 19, 2014

Hi-

I know that I just finished writing an update, but of course there is more to say! I hope you don’t mind another update already, but I want to share the newest info that I have.

First if all, I received by bloods back today. I had to have them drawn again today because of how horrendous and critical they were last time, as the values that regulate my heart were not good and were in the critical range. In fact, it was at the point that my heart could literally suffer an arrhythmia or cardiac arrest at any moment. I also needed to have my bloods done so that I can have the CT performed on Monday that I need to further diagnose what is happening with my legs and why and my left leg especially is having severe edema, discoloration, and burning.

Well, I received my bloods back and it so happened that my bloods dropped even more. I can’t believe how low they are. This is really a matter of life and death at this point because to have the values that I have, it is extremely critical. The doctors don’t even know how my heart is continuing to beat without going into an arrhythmia or cardiac arrest. I never had blood readings that read so low.

I should really be in the hospital. I desperately need to be helped and stabilized. However, there is no hospital in the local area that can really help me because my bloods dropping is due to an underlying problem such as my autonomic dysfunction, neurological condition, and severe gastroparesis. Therefore, I really need to get to a hospital in California or someplace that can better know how to handle my condition. The best place of course would be to go to Mexico and to have that Ketamine Coma already so that I can be hopefully “cured," but as I stated in past blogs, we don’t have the funds right and it isn’t going to happen if we don’t have the money. So in the meantime, I am basically on a “waiting” game and hoping that I will be able to raise enough money and hold out before I expire. I am like a ticking time bomb waiting to detonate and I can’t receive the needed treatment that will save my life and stop the detonation because I don’t have the funds to do so.

 

 
 

Updated posted by Fallon Mirsky 1 day ago

So since I obviously can’t get to the ideal place right now, which is Mexico, I have to make do with what I can do, which is go someplace within the United States that at least can help me. However, there isn’t any local hospitals that can really help me and therefore, we really need to get to California so that they can help my Gastroparesis. They are definitely not Mexico, but they are the next best thing and they are definitely better than going to a hospital around here because no one knows anything about my condition around here. However, California of course isn’t around the corner either nor is it cheap. So I still have the problem of having to pay for it and also that I have to travel across the country.

I can't go to a hospital in the local area even though it is thought that they might be at the very least able to “stabilize” me. Going to a hospital here would not be such a good idea because since they don’t really know how to treat my underlying condition and such, they can easily worsen my overall condition. My disease spreads like a wildflower and easily spreads through trauma. Since I will definitely need special medication through IVs because in order to stabilize me it isn’t a matter of just giving a pill or a simple shot, but I will need a very potent solution to help bring up my bloods that even the normal person would find uncomfortable and painful. The stuff that I need to bring up my blood values will literally burn up my veins like crazy and it will cause me great distress. That is why I would definitely need ketamine while I had this done. Ketamine would not only help me deal with the pain, but it also carries with it a special property that hopefully ‘contains’ the illness and stops it from spreading or slows it down at the very least. Yet, no hospital in the local area really knows how to administer ketamine in this way around the clock. It is reality complicated and goes far more into this than I am going. But to put it shortly… I really can’t go to a hospital here because they are not equipped to handle my condition and they will only make me worse.

So I don’t know what we are going to do. I am deathly scared because I know that my heart can literally “give” at a moments notice. They tried to raise my heart meds, so we are hoping that it will help. Of course it doesn’t help when some of the meds that I take to raise my bloods are in the ice pops that I eat and since I have been having more trouble than ever trying to eat them, I haven’t really been able to take all the necessary medication that I need to keep my bloods up or even bring them up. That is just one more reason why I need to go to California.

I need to get to California or to Mexico so that they can work on my GI tract so that I can eat or something. They really need to work on my severe Gastroparesis because since my entire GI tract is shut down, I cannot eat or drink basically anything. Even the littlest things that I have been living on such as egg whites and ice pops (which have the medications in them for my bloods), and ice-cream are getting impossible to get down. So since I can’t get the ice pops down, I can’t get the medications to bring up my bloods down. In addition, due to the severe Gastroparesis, I can’t even absorb my medications that I take in pill form. So it just isn’t a matter of just that I can’t ‘eat or drink.’

I don’t know what is going to happen now. I am crossing my fingers that there will be an answer to all this. I know that I desperately need to go to Mexico or at the very least to California, but I also know that we need money in order to do that. I am really hoping that we receive donations and help from others because I am literally on the verge of dying. I can literally die at any moment from an arrhythmia or even cardiac arrest.

So I am crossing my fingers that nothing will happen and I will make it at the very least to my scheduled appointment in May to California. We are scheduled to leave on May 13th to go to California and then we are hoping to go to Mexico in July for the radical Ketamine Coma. But like I said previously, it is all dependent upon funds and therefore, I really need help from others.

 

 
 

Updated posted by Fallon Mirsky 1 day ago

In the meantime, I have been trying to raise money and awareness for my condition. I have been working with a production team that is working on producing a movie that is supposed to be coming out in the next year or so. I was very fortunate to have them select me to do an interview in their video. It is a Scott Goldberg Film called “Moirai.” In addition, they have been so willing to help me in any way possible in trying to find ways of getting me to Mexico as well. Below are some pictures of the pictures that were taken from day we did the shooting. They are making a video as well, and I will post the video as soon as it becomes available. I am so thankful to all who made that video and pictures possible, and I am so honored that they decided to have me do an interview for movie.

The race has been long and I hope the finish line is coming soon. I don’t know how many hurdles I can keep jumping over and making it through. I really need to get help and help soon. I can’t tell you how much all the support and encouragement that people has given to me means to me. It is this support and encouragement that keeps me going and helps me get over all those hurdles in the road.

Well… I just wanted to update you on the latest. Monday morning I have the CT scan first thing in the morning so perhaps we might have more answers as to what is happening with me. We really are wondering what it could be because it could be related to my neurological condition such as my Reflex Sympathetic Dystrophy and autonomic dysfunction, my heart failure, my proteins spilling out because of my Gastroparesis, a blood clot such as deep vein thrombosis, or a combination of them. So fingers crossed!

Remember… I really need help! To help, donations are accepted at http://www.gofundme.com/FallonMirsky. Please spread the word!

Until Next time. Happy Passover and Happy Easter to all!!

Love,
Fallon

 

 
 
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Created by Fallon Mirsky on December 24, 2011





HOMEPAGE AND BLOG: HTTP://FallonMirsky.wordpress.com

Please help me become the 38th patient to undergo a radical Ketamine Coma in Mexico and help me regain my life!  In 2001, I was diagnosed and began suffering from rare and life-threatening diseases known as Reflex Sympathetic Dystrophy, Autonomic Dysfunction, Gastroparesis, Osteonecrosis and a Pituitary brain tumor. I am rapidly deteriorating and unless something is done soon, I will soon die. I have deteriorated so much and the pain has been so profound that I must undergo the most extreme and expensive of therapies—being placed under a Ketamine coma—to hopefully reset the pain connections of the body and fix the nervous system. 

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!
 
 
 
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13 years is a long time to be on the verge of death?

posted by Patricia Patane 5 days ago

I say we bombard Jeff Rosen and the Today Show with tweets. Everyday

posted by Ben Seay 4 months ago

Hi Fallon, As I was awaiting my turn for Sympathetic nerve injections for my RSD I saw your flyer. I want you to know although I am walking again and was never as ill as yourself I understand. I also learned who really cared about me and unless your in a situation as yourself most don't understand. Unfortunately I am not in the financial situation to help, I'd like to help by being your friend. If you'd like you can email me at mrsfrogprince@gmail.com

posted by Heidi Breen 15 months ago

Hi Fallon, I did not know you had a friend like Missy. I have 3 "friends". Papoose, Spanky and Nefertitti. They are my wonderful friends and companions. I don't know if the following would be helpful or a comfort to you, but I thought I would pass it on. I got it from a daily devotional from Joseph Prince Ministries. He is SUPER positive and has LOTS to say about how Jesus heals. You can surely find more about him by googling him. You can ask them their ministry to pray for you if you like. Here is what I received today: "Someone once told me that just because you ask God for something, it does not mean that He will give it to you. Quoting 1 John 5:1415, he said that we first have to ask according to His will before He hears and gives us what we ask of Him. Of course, we do not ask for things that are against Gods will or Word. But what is normally implied in the earlier statement is that we dont always know what Gods will for us is what will be, will be. But didnt Jesus say, He who has seen Me has seen the Father? (John 14:9) This means that if you want to know what the Fathers will, mind, heart or attitude toward you and your family is, just look at Jesus in the Gospel stories. So if your child is sick, is it Gods will to heal him? Well, look at Jesus and see how He ministered to children who were sick the Syro-Phoenicians daughter who was demon-possessed (Mark 7:2430), Jairus daughter who was dead (Mark 5:2224, 3543), and the widow of Nains only son who had died and was about to be buried. (Luke 7:1215) Jesus cast out the demon. He raised the dead. He healed them all! Beloved, dont say, We can never know Gods will. Sometimes He heals, sometimes He doesnt. He may prosper us, but He may also take away our prosperity. The Jesus of the Bible never made anyone sick. He never made anyone poor. He made the little become much with 12 baskets full of leftovers. (Matthew 14:20) He gave a net-breaking, boat-sinking load of fish to fishermen. (Luke 5:67) My friend, the Jesus of the Bible loves to heal, deliver, prosper and save people. This Jesus is the same yesterday, today, and forever. (Hebrews 13:8) And He says to you today, If you had known Me, you would have known My Father also; and from now on you know Him and have seen Him. So you can know Gods will for you. You can see what He will do for you when you know the Jesus of the Bible and what He did. "

posted by Laurie Burke 16 months ago

I have been sick for too long. I have been officially diagnosed since 2001. But, they think I possibly have had it longer than that!!

posted by Fallon Mirsky 17 months ago

how long have you been sick

posted by Patricia Patane 17 months ago

Would like to heal you and advise you immediately to take Aloe Vera Gel from forever living on this id number 910002247475. Aloe Vera from forever has the potential to restore functionality of the intestines and also stop bleeding. I will heal you and stop the bleeding with the techniques bestowed and taught by my Master and my healing teacher. God bless you. Know you are healthy and all is well . Lord be with you . Amen

posted by Nayanika Jayaram 19 months ago

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$24,520 raised by 283 people in 28 months.

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God bless you and I know He hears our prayers for you. God's healing is on the way.

 

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In honor of my mother, Marie, who worked for your parents. Good luck in your fight. Be strong!

 

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I will try to do more each month

 

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