I know I already written a few days ago, but I just wanted to alert you to the publication of an article that I was featured in. It is in the QUEENS COURIER and can be found at http://queenscourier.com/2014/astoria-fundraiser-to-help-woman-get-life-saving-treatment/. Although there are quite a few errors in the article, it was nice to see an article published. I was also glad that the article was published because it notified the public of the fundraiser that will be held this Thursday, February 27th at the Melrose Ballroom. I am only hoping that this “Winter Vortex” gives us a break and it gives me some “nice” weather for the fundraiser. I know people don’t really like to come out when it is cold and especially in a snowstorm, so I am hoping that it won’t keep people away. I know that they are talking about another snowstorm possibly Wednesday, but I am hoping it won’t interfere. Plus even if it snows… this will be a nice escape of it, as it will be a fulfilled night full of entertainment, drinks, auctions, raffles, etc.
However, since there are some mistakes in the article, I would like to clarify some of it so that everyone is on the same page. First, the article stated that the fundraiser is being held to “raise money to pay for a Ketamine coma treatment and multivisceral organ transplant in May in Mexico.” The fundraiser is actually being held is to raise funds for all my medical expenses in general, as my illness is extremely expensive and funds are desperately needed to needed to continue treatments and pay for medications. I need various treatments and medications, which includes a radical ketamine coma and radical multivisceral organ transplant, but only the ketamine coma will be taking place in May in Mexico. We are hoping that we can possibly avoid having to go for the transplant by having the Ketamine Coma, as it is quite possible for this Ketamine Coma to actually help my organs as well and turn them around as well.
My organs are completely shutting down, I cannot eat, and I also suffer from severe Gastroparesis. I desperately need a new stomach, small and large intestine, pancreas, and liver. However, it is quite possible and hopeful that the ketamine coma in Mexico will be able to reverse the Gastroparesis and help my organs to function again, as it is partially a resultant to the autonomic dysfunction & my rare neurological illness known as Reflex Sympathetic Dystrophy. The hope is that with the ketamine coma reversing the autonomic dysfunction and the Reflex Sympathetic dystrophy, it will also reverse the Gastroparesis as well. However, there is no guarantee, but that is the goal and that is what we are hoping for. If that does not occur, then other means will have to be made to have the organ transplant.
Yet, in any aspect, I still need treatment in the United States as I await the Ketamine Coma in Mexico. Even though the Ketamine Coma is one of my very last options and possibilities to help me, I still need to have procedures to help me “buy” time until that is done. I need very expensive medication and procedures that are not all covered by the Health Insurance and I also have to continue to seek the expertise of my doctors, which are not local. I can’t even afford the very medications such as ketamine and others that I need at home in order to help me deal with all the pain and suffering. This is the most painful disease that is imaginable and to be quite honest, it is the most painful disease known to medicine. It ranks higher than childbirth, amputation, etc. and I never get a moments relief from it. It has even been stated, “If Hell was a medical condition, it would be known as my illness.” I live in this Hell 24/7 and I never get a break from my suffering. I depend on many medications and procedures/treatments to help with the suffering and pain and it is very important that I get them because any bit of relief (no matter how small when you are suffering as much as I am) is worth it. However, without the funds, it has been impossible to get the necessary medication I need to even give me any sense of relief at home from this illness.
We desperately need as much help as possible. The medical treatments that I need are taking a huge financial toll on my family and we are basically flat broke. I guess that is the easiest way to just say it. We have been fighting this illness for so long that the money has to run out sooner or later. We have gone through all our savings and sold whatever we could. My dad owns a business and when he travels with me, the company also suffers because he can’t work and no money can be made. We barely have enough money to even pay for the mortgage, which hasn’t been paid in about 3 months. Even putting food on the table is difficult. Never did I think that we would ever have trouble going food shopping and paying for food. However, the weeks that my parents are able to afford to put food on the table, I feel extremely lucky. We couldn’t even celebrate the holidays such as Thanksgiving or Chanukah or Christmas because of our financial crisis. We are such in financial debt and it is snowballing out of proportion.
I know that the article stated that the medical treatments have “taken a financial toll on her family, leaving them with only enough to pay for a mortgage and food,” but it actually has done far more than that! It has taken such a huge toll on my family both financially and emotionally. Thank goodness I have such amazing parents… especially my dad. I can never thank them enough for all that they have done because not only have they given up all their life savings, but they are working harder than ever in order to try to make ends meet even though it is a losing battle. My parents have given up their lives to me when they should be at the point when they should be actually having the “time of their lives”. Instead of going on trips, going out to dinner, socializing, etc., my parents get up early to work (6 days a week for my mom that has MS and 7 days for my dad) and they then remain in the house to take care of me. All money goes towards my illness, so they don’t even have any money to buy new clothes or anything that they might want. My dad continues to be unconditionally devoted to my full recovery, traveling this road by my side and will not rest until that goal is accomplished and I am on my feet again. They also have had the job of keeping my hopes alive and not allowing me to give up. Thank you mom and dad for never allowing me to lose my faith even though there doesn’t always seem to be a light at the end of the tunnel.
Yet, I only weigh in the 60s and my organs and body are shutting down. I am getting sicker and sicker, and I desperately need help. I am rapidly deteriorating and unless I seek treatment and “buy” time while we await the Ketamine coma, which I definitely can’t have until I raise enough money, I don’t even know if I will make it to be able to have the Coma. We definitely have very extensive medical expenses to still pay for besides the trip and treatment to Mexico and without the help of others, the trip to Mexico might not even be a possibility, as I won’t be able to even be strong enough or capable to make the journey to Mexico to receive the much needed Ketamine Coma.
Secondly, the article stated, “The treatment, which costs at least $10,000, would be a medically induced coma in hopes of restarting her central nervous system and replacing her entire digestive system.” As stated before, the ketamine coma will not deal with replacing my entire digestive system, but it will just deal with restarting my central nervous system. The Ketamine Coma is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. I will be the 38th patient to undergo this procedure. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. In fact, the body is basically kept alive on machines and ventilators.
The cost of the Ketamine Coma alone will end up costing us at least $100,000. I am known to be the “worst” case that has ever been seen and will undergo the transplant. For a normal case, it usually costs about $100,000. However, in a case like mine where anything is possible because I have so many risks, I need to have much more money available because more than likely we will need it because we will have to have additional problems that the ‘normal’ patient wouldn’t have. Since I am considered high risk, it is quite possible that I will have to be in the Coma longer than the normal person, have many more interventions, and be down in Mexico much longer than expected. Therefore, I need to have the funds available to pay for this. Cases that were similar to mine but not as bad ended up costing close to a million dollars. The one case that was almost identical to me ended up actually costing nearly a million dollars and the family had to literally fundraise and constantly send money to Mexico in order to provide the necessary treatment for her. Instead of staying the usual expected amount, she had to have 2 ketamine comas while she was in Mexico and had to stay about 2 years in Mexico because of complications that arose. So we have to be prepared just in case we run into the same problems, as the doctors are expecting many complications due to my extreme condition and how I am such at such a high-risk candidate because of how sick I am.
As stated before, the ketamine coma does not entail receiving the multivisceral transplant, which is considered the most dangerous transplant to have. It entails replacing my entire digestive system (stomach, small and large intestine, pancreas and liver). This transplant will be done at a different time and in the United States (at one of the 6 hospitals that do it). However, it will also be extremely expensive because not only will we have to worry about the cost of the actual surgery, but we will also have to worry about the anti-rejection drugs (can cost over $1000 a month and not covered on insurance) afterwards. In addition, as there are only 6 hospitals in the country that perform this very radical and dangerous transplant, it will force us to relocate for awhile (at least 6 months). But I first have to worry about undergoing the Ketamine Coma, which will reset my central nervous system and can potentially actually reverse the Gastroparesis and avoid me having to go for this transplant. So I am not going to have to worry about this multivisceral transplant because hopefully I will be able to have the Ketamine Coma and it will take care of everything like we are hoping and praying for . As my mom once said to me, “Do not worry until I say so!”
So I just wanted to clarify the article so everyone is familiar with the actual and TRUE story. I hope that everyone will be able to attend the event, as it will be a great night at the Melrose Ballroom. I desperately need your help and all the help I can get because without it, I will die. I am rapidly deteriorating and to be quite frank and honest… I don’t have time on my side. I desperately need time, medications, and to see doctors, but we can’t afford all my medical needs alone. We need help. So please come and spread the word! It will be Thursday, February 27th at the Melrose Ballroom, which is located at 36-08 33rd Street, Astoria. It begins at 7 PM and will last until 10 PM. It will include entertainment, drinks, raffles, an auction and raffle prizes. Any questions, please contact email@example.com.
Youth or adult bracelets, in pink or blue, are also being sold to raise money. Not only will they be sold during the event, but also they can be purchased by contacting Femirsky@gmail.com. The bracelets, which state “Help Fallon Fight”, are $5, and all money goes towards the medical expenses for me.
A friend once told me, “Where there is life- there is hope!” So I am hoping that in the end, I will be ‘cured’ and able to live a long and healthy life. I really don’t want to die, as I have so much to live for. I want to be able to beat this illness and be able to regain the life that was robbed from me. I want to be able to be able to become that doctor that I always dreamed of and be able to help others just like me.
Thanks again for all your support and encouragement. I am so thankful for all of the amazing people who continue to take this journey with me. I just want you all to know that your love, support and prayers mean the world to me! It definitely has not been easy, but knowing that I have your support makes me stronger and able to fight this illness better. Thank you for all your kind donations because even the littlest amount (even 1 dollar) makes a HUGE difference, as that is one less dollar that we have to worry about!