Just wanted to give you an update on all that is happening as well as desperately plead with you for help because I desperately need your help more than ever. I know I sound like a broken record already with always saying how I am “getting worse” and how I “need to raise funds”, but the truth is that I am at the point now where my family is literally unable to afford any treatment whatsoever and I desperately need treatment to save my life. I have deteriorated to the point that unless something is done soon, I am not going to make it much longer. In fact, I am hopefully going to be leaving for Mexico soon because I am in need of this lifesaving procedure and it is basically my last hope. I need to have it done very soon because I am going against the clock right now. Let me explain!
Unfortunately I have taken a turn for the worse. I am really not doing well and desperately need your help if I am going to be able to live because I need lifesaving treatment that we can’t afford on our own. Things are worse than you can imagine. My disease has become such a financial burden on my entire family that the bills are just astronomical. We can no longer even pay for the limited treatment that I was receiving. It is like it completely snowballed out-of-control. The medical bills are just piling up and has gotten to the point that we can’t even pay our mortgage, have been having trouble even putting food on the table, and couldn’t even pay our monthly health insurance bill. As a result, my health insurance was even taken away and I have been going without health insurance because the cost of my health insurance per month was just too much to come up with. So now I can’t even receive the limited treatment that the insurance was covering.
I know that people might think that I would be “ok” because I could always receive state Medicaid. However, in my case Medicaid is definitely not the answer. I really have no use for Medicaid because first of all in terms of my doctors… my doctors are specialists and since my disease is so rare and complex, the doctors that I do see don’t really take Medicaid. In addition, most of my doctors are out-of-state and therefore Medicaid won’t even help because it is only good in the state of New York. Second of all, it won’t cover the procedures or surgeries that I need because not only are my surgeries and procedures also out-of-state and Medicaid won’t cover those, but Medicaid also doesn’t cover the surgeries/procedures because they are not your “everyday” ones. In terms of my medications, Medicaid coverage doesn’t work because I take very potent medications and I have even difficulty having my private health insurance cover them. So… Medicaid is definitely not the answer for me.
So I really need to have private health insurance, which is so very expensive. To think… the private health insurance is so expensive and yet, it doesn’t even cover everything that I need. I still need to pay so much out-of-pocket for surgeries/procedures, doctors, medications, etc. because all of them are still not covered under the private health insurance. Plus, the copayments also add up and it basically comes out to us paying over $25,000 annually in just copayments alone. But at least it does help in some respects so I definitely need it because believe it or not, with as much money as I need to put out to pay for my medications, doctors, surgeries/procedures out-of-pocket, it is still a lot less than I would have to pay if I didn’t have insurance. Believe it or not the insurance does pay for things even though I am stuck paying out so much money too. It is just that it costs so much money to be ‘healthy!’ As the quote definitely goes, “Health is Wealth!”
So not only are we in desperate need of raising funds to help pay for my health insurance, but we are in desperate need to raise funds for my treatment as well. After all like I said before, even though my health insurance does cover a lot, it doesn’t cover everything and my treatment is extremely expensive. One thing it doesn’t cover is the trip to Mexico to receive that radical Ketamine Coma, which I desperately need and finally got the call for. The doctors want to do the coma ASAP because things have gotten so bad and I am running out of time, but unfortunately I won’t be able to go unless I have the money behind me. We definitely can’t afford it and that is why we desperately need your help.
I spoke to the doctor from Mexico today and it is a “Go” for Mexico. The doctor wants to see me in a week or two to finalize everything in person. He said that we really are working against the clock and really need to have the Coma done as soon as possible because I am so very sick. He said that unless something is done soon, I am going to die. We have made it to the final stages of finalizing everything.
The doctor said that I am one of the worst cases in the world. He said that there really have only been 2 other cases that have been like mine. However, those two patients both had a miraculous recovery, so I am really hoping and praying that I will be as fortunate. However, he said that I am one “really sick person!” He said that the way the disease has affected me is extremely rare. Not only is the disease in my body, but the disease is “visceral” as well. It is very rare for the disease to go “visceral,” which means that it is all in my organs and tissues. So it is extremely difficult to treat and extremely life-threatening. He said that this Ketamine Coma is basically my ONLY option that I have left. It is the only thing that can possibly help and save my life.
This coma in Mexico is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. 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. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Patients are supported by a ventilator and monitored in the ICU.
Going to Mexico and having this intensive ketamine coma is a radical and scary treatment, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!! I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.” So I am only hoping that I will be able to be able to raise the money and be able to have this opportunity to have this Coma.
The doctor said that the coma should cost about $100,000. He said that the average person spends about 1 month in Mexico. However, he said that all bets are off with me because I am such in a horrendous condition. He said that I could down in Mexico so much longer and therefore I need to be prepared for that. He said that I might be able to be able to come off the ventilators after about 2 weeks or I might not be able to come off the ventilators for a month. There really is no protocol and therefore, we don’t really know what is going to happen once I go under. Therefore, we really don’t know the final cost of the coma, but it will cost at least $100,000.
This really scares me because I know we can’t even afford the $100,000. If I need to stay longer and if it costs more… I don’t know how on earth we are going to be able to afford that. The other two cases that were nearly identical to mine ended up having to stay longer and costing them so much more money. My mom is going to be staying behind in the states to hopefully take care of things while we are gone, but how long can she do it for? My dad’s business will never survive especially longer than a month without him. That is why I am asking for so much help and pleading with you to help me raise funds. Not only can’t we afford the $100,000 to get me the treatment, but also we are definitely going to need money afterwards in case I have to stay there.
I really have strong hopes for this Ketamine coma. Not only am I looking for it to save my life, but also it will let me live pain free and let me be able to eat again! The other patients that were identical to me and couldn’t eat a morsel before the Coma are now eating full meals.
The doctor is extremely kind. I really like him. He is trying to make this as ‘easy’ for us as possible. He is helping us make all the arrangements and everything. He even gave me his cell number and he said I could call him anytime to ask him anything. I even have a meeting with him tomorrow morning because he is going to be gathering information for me regarding my visit to him and also he has one of the patients coming to see him that I am “identical” to. So he is going to have me talk to her so I know what to expect. Her family will also talk to my dad so that he knows what to expect as well. This way they can help get us situated too in Mexico in terms of hotel, airfare, where to go, etc. because they have gone through this before.
The doctor wants us to come to Mexico to meet with the team and finalize plans in person so we can know everything that is going on prior to the Coma. This way we can have all our questions answered and we can explore the hospital and surroundings. This will be the first time I will ever be out of the country. So we are planning on leaving Sunday, January 19th or the following Sunday, which is January 26th. We are only going to be going for a few days just to meet with the team and to finalize everything, so we should be back by the Wednesday of that week. But of course this is all dependent on the funds as well. We will then return shortly afterwards for the real coma. This trip is just to ‘explore’ and get used to the surroundings and to see what I am in for. After all, I really have no idea what I am in for. I know from what people tell me, but I really don’t know.
So I have the passports and the “go ahead!” All I am missing is the funds, prayers, and support. So hopefully I will be able to soon get those in my basket as well and be on my way to Mexico and a new life.
Not only am I hoping for a miracle to take place in Mexico… to go from a life of excruciating pain to being able to smile, talk and move again, but I am hoping for a greater miracle of having the community came together to raise enough money to benefit me and contribute to research for the disorder that afflicts me, reflex sympathetic dystrophy or RSD. So I am really pleading for your help. I really need all the help and support that I can get because without it I will definitely not be able to make this trip and have this coma that can potentially save my life. I am really pleading that you please help me spread the word of my website and help me raise funds. If you can please think of any way of fundraising or do anything on your own to help bring in donations, it would be so much appreciated. I know the trick really would be media coverage, so if anyone has connections… please HELP!
In addition, this Ketamine coma is going to be extremely dangerous. I am going to need all the prayers and support that I can get during this difficult time. This Ketamine Coma is both terrifying and hopeful. As the doctor explained to us, due to the nature of the coma and my debilitated state of health, it will be a long slow path back to some normalcy. The road to recovery will prove to be difficult as well as an incredible challenge.
I will be getting enough ketamine in my body that can basically hold a hospital. When I come out of the Coma, I will have to basically relearn everything. After the coma, a lot of retraining is involved—learning how to sit up again, how to walk again. But this experience has shown me things I probably would never learn in a lifetime. Now I realize how much more grateful I am for the simple things.
So hopefully we will be off to Mexico in the next week or so to meet the team and finalize everything. Like I said before, this will be the very first time I will be out-of-the country. We will going to Monterrey, which I am hoping will speak a lot of English because I really don’t know that much Spanish even though I was pretty fluent in Spanish in High School. But that was so many years ago and you know how it goes… if you don’t use it, you lose it! I heard Mexico is really beautiful, so I am really excited. It is supposed to be really warm. I only hope I get to see some things. The doctor wants us to explore not only the hospital and meet the team and everything, but he wants us to explore the surroundings too so we get used to the area. So I am hoping that I will get to see a lot of cool things. I will of course bring my camera and take pictures of everything. I just hope my body lets me explore because I am so weak. But the weather should be beautiful there, so that should help. One thing my dad and I won’t be doing though is drinking the water or having ice because my mom keeps telling us not to drink the water and of course since ice is made of water… that is off limits too! I only wish that I was headed to Mexico under better circumstances. But after I go through with this Ketamine Coma and I am better… I will be able to travel the world and nothing will stop me or get me down!
Well… just wanted to update you on what has been happening and all the news that has happed. I will continue to keep you posted as we prepare for this trip and for this upcoming treatment of HOPE as it evolves.
An article featuring Fallon was also written recently by Stephanie Kulish and can be found at:
My dad and mom also set up a website to raise funds for the trip to Mexico at: