Fallon's Medical Fund
Please help me because I am rapidly deteriorating and will die if I don't get the lifesaving medical treatment that I desperately need. I know it sounds insane to be afflicted with as many illnesses/problems as I have, but please hear my plea for help because we can no longer afford my medical treatment and I am too young to die. The doctors can't even believe that I am still alive despite all that I am afflicted with, but I am a FIGHTER and I want to beat this illness so that I can become a doctor a make a difference the lives of others.
I suffer from extremely rare, debilitating, painful, life threatening illnesses known as Gastroparesis, Short Bowel Syndrome, Intestinal Pseudo-Obstruction, Dysautonomia, Reflex Sympathetic Dystrophy, and a Pituitary Brain tumor. Unfortunately, due to the complexity of my illness, we have to seek the help of top specialists across the country (i.e. Cleveland Clinic, California, Nebraska, etc.) because not many doctors are familiar and knowledgeable about my condition. Medical treatment for my illness is extremely expensive because I need multiple surgeries/procedures, medications, and traveling expenses to see specialists.
I am in desperate need of going to California to seek the knowledge of specialists and to have multiple surgeries. My entire GI tract has completely failed me, and I am unable to eat. My weight has plummeted to only weighing in the 60+ range, and I spend every week going to the hospital to have my colon cleaned out so that I don’t go toxic. I need to go to Nebraska to have tubes placed in my jugular vein to try to feed me as well as to remove colon, which will later culminate in a multivisceral organ transplant that only 8 hospitals perform (stomach, small and large intestines, pancreas, and liver) when I am more stable. However, unless we receive donations, we will not be able to go because we can't afford it on our own.
Just to keep me going, I need to take constant medication, which is over 50 pills daily and I even take multiple injections. These include Morphine, Dilaudid, Nucynta, Ketamine to just name a few. I am even on Medical Marijuana. I even go 3 times a week into the hospital and OR to get my intestines/colon emptied because my body will go toxic and septic if I don't, as well as to get ketamine infusions, blocks, etc. because the pain from these illnesses and in order to control the dysautonomia is too great. The medical bills are way too great and donations are much needed to help pay for these costs just keep me functioning and alive day-to-day.
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 these extremely rare, painful, and crippling illnesses that will kill me if I don't get help quickly. I am a timebomb just ticking away and I really hope to be able to be helped before I explode. There are so many times that we don't even know if I will make it through a day or night!
I now am crippled by severe illnesses including dysautonomia and Reflex Sympathetic Dystrophy 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. It ranks higher on the pain scale than Cancer, childbirth, amputation of a digit, etc.
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.
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 we 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 to overcome this illness. We have a growing stack of bills from very costly insurance premiums, co-pays, procedures, doctors, and traveling expenses. 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.
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 love life and I have so much to offer the world! I want to get better so I can become that doctor I always dreamed of being so I can help others in need.
In short, I desperately need your help to get the lifesaving treatment I desperately need. We have exhausted all methods of receiving help and trying to get me the medical treatment that I require. Setting up this account was very difficult because we were always a family that “gave” and never had to ask for help. However, unfortunately, we have gotten in over our head in medical expenses and in desperate need of financial help to pay for my medical expenses. It is hard to ask for help…. As we start this new year- we are in debt over 100,000. We are even having difficulty paying for our health insurance on a monthly basis and it would be a disaster to have to go without it.
I am very humbly asking for financial help, no matter what size the donation, because I wont be able to get the lifesaving treatment that I need without your help. Even if you are unable to donate, please pass on this site, send a few prayers our way, and if you could read my story through my blogs. Thank you for taking the time to read this. I am praying that my life will only get better so I can live a long and happy one. To better understand what I am going through, please watch the movie “Miracles from Heaven.” It is so close to my story.
Thank you for all your help and support. All donations are appreciative. Please help me because even $1 is one less than I have to worry about.
I know I haven’t written in awhile, but I just figured everyone just had enough with my story. Yet, even though I have tried to not ask for ‘help’ from others, I realized that it really is impossible because I really can’t get on and move forward without the ‘help’ of friends. I need them in many ways as I not only need them emotionally, but I also need as many donations as possible because the medical expenses that I have incurred are astronomical and the ones we are going to be facing will be out-of-the-park. I am having a very difficult time getting treatment because I don’t have the funds for it, and as a result, my health is declining. The bills are so huge and medications/treatments are so expensive that we don’t have the money to be able to afford them. I desperately need help, which includes treatments and medications, but we cannot afford the by ourselves. In addition, I just got huge news from my medical team about huge upcoming surgeries and procedures, but they will also be very costly and we won’t be able to afford them without help from others. I will explain more below.
In addition, I realized I also needed to write some blogs about my journey because after careful thinking and lots of soul searching, I realized that I need to write about my story because not only is this an outlet for me to get my feelings across, but it’s a way for others to become knowledgeable about my journey, which is not a journey that a regular person usually has. It is a journey of a brave person who doesn’t let roadblocks get in her way, and it is a journey of a person who tries to persevere over anything that may come her way. If there is something that I can give to the world, it is the ability to show that even though I was dealt a bad deck of cards, I am still trying to persevere and try to overcome this illness as much as possible so that I can live as full as a life as possible. I also thought about doing a YouTube channel, which I think I might do in the future. But at this point, I figured that I would just update all that has been happening with a brief blog.
A lot has been happening since I last blogged. I have been declining and now it is at the point where I am basically living 2-3 days in the hospital per week. I am in physical therapy basically 4-5 times a week because my muscles ae deteriorating and they cannot activate enough to actually ‘build’ muscle. My GI system has also gotten to the point where I am in total intestinal failure, as everything I eat does not get absorbed and basically as it goes into my body is how it comes out. Not only am I in intestinal failure, but my body is failing in multiple ways and I have even been diagnosed with “failure to thrive.” My body organs are shutting down and I have even been told that they only give me at the very most 1-2 years unless something changes.
Recently I went to a surgeon and he said to me “I am looking at someone younger than me who is going to die a premature death if something isn’t done and done fast. I give you only 1-2 years at the very most until you will die if something isn’t done.” It appears that my body is in intestinal failure and it is also affecting all my other organs. I am also starving to death because I can’t absorb anything and as a result, I am also starving my heart. The surgeon said that my heart can’t go much longer being ‘starved!’ We have tried numerous ways to feed me, but all attempts have failed.
The surgeon said that I am very complicated and he will need the help of the entire hospital and every specialty to keep me alive when I am operated because I have more stuff wrong with me than he knows and can handle. But he is willing to operate, but under no circumstances will this be an easy operation. It will be a very long and probably expensive operation because lots of doctors will be involved and I will need lots of care afterwards, which includes supplies that will not be covered by insurance. But the surgeon said that this is something that must be done if I want to be able to stay alive.
It appears that not only will I need my intestines taken out, but my rectum has failed me as well. I have finally build up enough confidence to finally say that I am 35 years old and wear diapers. I have always been so embarrassed because what 35-year-old wears diapers? But I am left to no other option. Since my rectum doesn’t work appropriately, I always end up leaking and having accidents especially at night when I am trying to sleep.
Since I can’t absorb anything, which includes food or liquid, the liquids usually just run right through me and that is why I have to wear diapers. I know it is confusing because it sounds strange how I don’t absorb and I say that everything comes out of me on one breath and then say that I don’t pass anything and have to be emptied in the OR on the next. Let me clarify it. In terms of both liquids and food… nothing gets absorbed in either case. However, liquids are fortunate not to get stuck in my body even though food does. Just as when someone doesn’t have a colon, a person has to drink more fluids than usual because they don’t have a colon to absorb the fluids, my body is behaving as if I don’t have a colon as well. Since the colon is the organ that absorbs the water in the body and since it is not working, whenever I take in water content, it just runs through my body.
Food on the other hand usually will become stuck in my intestines since there is no peristalsis. Although some does come out minimally (and how it comes out is how it went it because it doesn’t get absorbed or breakdown), the majority will remain in the colon. Whenever I eat, my body looks like I am literally 9 months pregnant and ready to give birth. That is why I have to go to the hospital at least once a week into the operating room because I need to be ‘emptied’ so that I don’t go septic. Going to the hospital at least once a week and into the operating room is not a way to live!
I can’t absorb food either and as a result I will need surgical J and G tubes placed in. Yes… I will need BOTH types of tubes because I am in total GI failure and you can only use J tubes and G tubes for certain kinds of foods and medications. Like you can’t put medications in the J tube because it will both bot be absorbed and clog it. I also will use one of the tubes as ‘vent.’ He doctors said that ‘whether I want to acknowledge it or not, I will end up having to have both a J and G tube because I will never be able to eat again. I can’t put it off much longer either because I am starving my body and especially my heart and I am going to die!’
The doctors really want me in the hospital asap because I need this surgery. The doctors said that I am in intestinal failure and I am in “failure to thrive,” which is leading to multi organ failure and heart failure. They want to put a port into my heart so that they can try to feed me. Nothing I eat gets absorbed, so essentially, I am literally starving to death. Literally. It comes right out of me as soon as I take it basically especially liquids. Then since my intestines are so dead and dilated and extended, it builds up with all this gas and fluid and other stuff that doesn't move and makes my abdomen even more extended. Since my colon is so distended and so 'Big' already, it is already way too big for my little abdominal cavity and it is also putting too much pressure on my organs, which is causing them to have problems and fail as well. Then when I eat something, my stomach and colon become distended because they are basically paralyzed and since it is already swollen and too big for my abdominal cavity, it puts even more pressure on my organs when it swells even more.
Not only am I literally ‘starving to death’ now, but I need to be strong for the surgeries because they are not easy surgeries at all. I thought that since I recovered from the surgery when I broke my hip, femur, and pelvis that I was in good shape. However, the doctor said that even though that was major surgery, it is nothing compared to this. Having GI surgery is really bad and hard and extremely dangerous because you literally have leaking stool in your body and that can easily kill you. In addition, whereas I was maintaining my weight before even though it was so very low, I am losing weight now.
They wanted to admit me asap, but with the snow and everything… it kind of messed things up. Plus, even though they wanted to admit me, I can’t really be admitted until I get some funds to pay for the surgery, the aftercare, and to help pay for the costs when my dad doesn’t work. I know what has to be done, but it just isn’t an option right now when we don’t have the money to do so. I also want to get a psychologist, which is not covered under my insurance because this surgery that my team wants to do is massive and I don’t know if I can honestly handle 2 tubes and a bag. I have been strong throughout this entire process, but I don’t know if I am strong enough to handle all this. In addition, all the supplies and surgery will be so expensive and to be quite honest, we really don’t have the funds to cover everything. I will have to have lots of equipment afterwards, which won’t be all covered by insurance. Plus, even though some of the surgery is covered, it isn’t completely covered by insurance and we really can’t afford the difference. My father will also have to miss lots of work to be by my side especially since he will have to stay in the hospital with me and such, which would mean him missing work as well. My dad has been by my side ever since we heard this devastating news and has been through everything with me to hold my hand through it all. So, there is a big financial component to this as well. So, everything is on hold right now until we get the funds to do all this.
I did speak to the doctors and told them already that when I do come to the hospital for the surgeries and have to stay, I am bringing Scooby. For all that don’t know Scooby, Scooby is my service dog and has been by my side throughout this entire process. He is by my side every day throughout everything I go through and goes with me everywhere. He goes with me to every doctor’s appointment, every hospital visit, etc. He is the best thing that ever happened to me and is the reason I am still here today. Everyone says, “He is the reason why I am still alive because he is keeping me going!” He is a service dog who knows how to sense when I have an attack of my dysautonomia. He is best friend and everything. He is the only thing that makes everything better!
In addition, I recently started another medication called Mestinon, which is used to treat muscle weakness and is a muscle strengthener. Mestinon is a drug that stimulates the parasympathetic nervous system by inhibiting the breakdown of the neurotransmitter (acetylcholine) the PNS runs on. It does this knocking down the enzyme, acetylcholinesterase, that does breaks up acetylcholine. That should mean more acetylcholine availability and more PNS activity – just what the doctor ordered for someone in my condition with dysautonomia and autonomic dysfunction. I think it does help but it has some horrible side effects even though they are starting to get better. I once overdosed on the drug this week because I took it with an over-the-counter acetylcholine inhibitor. Didn't think it was doing anything so didn't think it would matter to take them both together. Well I ended up having huge problems. My eyeballs were pinpoint and I couldn't talk and my eyes were blurry and more. I had to ride it out (8 hours) because that was all that could really be done.
In the meantime, I am still trying not to let it get me down. I still continue to try to smile and try to look the best I can. I got into makeup and have been watching lots of YouTube videos on how to apply it. Not only am I having a lot of fun with putting on the makeup, but my grandma always taught me that "if you look good, you feel good!" When I am all dressed up and have makeup, it makes me feel more 'normal' and it makes me feel like I am not as sick as I really am. Plus, it makes it look like I am not as "sick" either. It makes other wonder how "sick" I really am because I honestly don't want to be known as the "sick one!" Why do others have to know me as being "sick" because I am still me!!
So that pretty much sums it all up as to what is happening. While the doctors are hopeful that they can help me, it is going to be a long road. If you can please help me raise the much-needed funds for my medical expenses because I desperately need them, I would greatly appreciate it because my life depends on it. I cannot get the treatment that I need nor can I get all the medications that I require. We are coming together as a family the best way we can, but we need help. If you can help me out in any way possible we would be forever grateful. I truly thank you for taking the time to read my story.
Happy New Year! I just wanted to write this and update everything that has been going on. I haven’t written in a while, but since I am rapidly deteriorating and in desperate need of treatment (i.e. surgeries/procedures, medications, doctors, etc.) that we can’t afford it, I figured I would write and ask for donations so that I can receive the much-needed donations. We have gotten way over our head in medical expenses. I also wanted to write this because I wanted others to know about what I am going through since it isn’t a common illness. Knowledge is power and if I can raise awareness through my GoFundMe page, then perhaps suggestions and other resources of help can be found.
Life has been harder than ever lately. 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 life basically has reverted to being with my dog, Scooby, who has been my very best friend and don’t know what I would do if I didn’t have him in my life. Every single doctor thinks it’s a miracle that I am still alive especially since I have organ failure, depleted blood levels, low electrolytes, weigh so little, etc. They are amazed with how much strength that I have. Yet, they all know that even though I have been fortunate to stay alive this long, they all know that it can’t last forever especially without medical treatment.
There is so much going on that I don’t even know where to start. I guess I should begin with a little bit of what happened with me to get me so sick.
I suffer from rare, complicated and life threatening illnesses known as dysautonomia, reflex sympathetic dystrophy, severe gastroparesis, intestinal pseudo-obstruction, short bowel syndrome, and even a pituitary brain tumor. I even have developed a host of other problems secondary to these illnesses such as losing my teeth and teeth/bone erosion, which has forced me to look like a ‘Jack O’Lantern’! I know it sounds like a laundry list and impossible to have, but it’s the truth. Who would have thought that the little signs that I expressed as a child was actually warning signs to this illness? It wasn’t until college that my whole world came crashing down.
When I was a child, I had little quirks here and there that stirred up, but doctors never picked up that I had any of these illnesses. We never heard of these illnesses so my parents never even thought to look further. Who would have thought that the minor stomach problems that I had when I was a baby would have turned into this? But all the docs said at that time was ‘sprinkle some Metamucil onto everything she eats!’ Who would have thought that when I broke a bone and when I skated and changed colors that they were actually showing a portion of this illness? However, I was always able to suppress the illness. However, as high school years were ending, I was getting sicker and it was getting harder to overcome and suppress things. It was getting more difficult to eat and I was losing weight. Yet, we still never heard of any of these illnesses as of yet and therefore, we didn’t know what was really happening. However, after freshman year at NYU, I ended up having foot surgery and that was the end of it. The disease erupted like a volcano and there has been no suppressing it ever since. It has been going rampant throughout my body raging like a wildfire.
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 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 these extremely rare, painful, and crippling illnesses that will kill me if I don't get help quickly. I am a time bomb just ticking away and I really hope to be able to be helped before I explode. There are so many times that we don't even know if I will make it through a day or night!
To begin with, I suffer from dysautonomia, which is malfunction of the autonomic nervous system. The nervous system controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of pupils, and temperature control. As a result, I have trouble regulating all of these systems in the body due to the malfunction of the autonomic nervous system.
Finally, I suffer from my GI system completely not working. From my esophagus to stomach, to small and large intestines, it is completely paralyzed. My entire GI tract has completely failed me, and I am unable to eat. I am unable to absorb nutrients, have severe muscle wasting/deterioration, and I look cachectic. My weight has plummeted to only weighing in the 60+ range, and I spend every week going to the hospital to have my colon cleaned out so that I don’t go toxic. I am even forced to wear diapers because of my GI system not working. This is not the life I want or should be having. I end up bloating up and looking like I am 9-months pregnant every time I do try to eat or drink something. I am 34-years old and yet, I have to wear diapers because I am always having ‘accidents’ due to the mucous leaking out from the impacted stool. I even have to use a special toilet in order to go to the bathroom because it positions me better.
Ideally the doctors would like to perform a multivisceral transplant on me. But unfortunately, with the insufficient funds, we waited so long that I have deteriorated to the point that I am not strong enough to withstand an operation like this. It is the worst transplant to undergo along with lung transplantation. So, the doctors said that the next step is to just remove the colon because it is imperative to do so and urgently needed. As time goes on and we wait to get funds, I only get worse and weaken further (which makes me a poorer candidate for surgery).
Therefore, the next step is to remove my colon as soon as possible. Not only do I need to remove it because it is completely ‘dead’ and causing other problems and affecting other organs as well, but they found cancerous polyps inside as well. Although they did remove them, they were unable to see how bad the entire colon is affected with the ‘cancerous polyps’ because the colon is so obstructed, paralyzed, dilated that they can’t get past the splenic flexure. Doctors have all agreed that I am one of the ‘sickest’ and most ‘complicated’ patients that they have seen. I have failed all treatments from a medical standpoint, as I have been on every medication available, which have been both FDA-approved and non-FDA approved. Therefore, the only thing left is for surgery.
However, in order for this to take place, it needs to happen outside the New York area, which is something we cannot afford at the current moment. My medical condition is extremely complicated and I not only need to be at a hospital with top surgeons who are capable of handling my unique situation, but I need to be in a place that can also be able to handle any other problem that may develop since my entire body is medically unstable and anything is possible to occur. I am not considered your ordinary ‘textbook case’ and many times my body even stumps and scares even the top physicians. I have had times when I sleep in the hospital with the paddles next to my bed because they are afraid my heart will go out during the nite, I’ve had doctors run out of the room to consult medical books because my body did something that they never see, etc.
In addition, in order me to proceed with the surgery, I will require not only Ketamine to be administered during the operation, but I will need it for days after as I recover in order to suppress my neurological illness. Every time my body is under stress or undergoes ‘trauma,’ my illness is not only exacerbated, but I have a huge chance of my illness spreading and worsening. Therefore, Ketamine must be administered for some days after the surgery to ‘quiet’ the body down and suppress the illness because Ketamine is a NMDA-receptor. However, not many hospitals do not administer Ketamine outside of the operating room, and they are hesitant to do so because it needs to be very closely monitored and done in the ICU. Most hospitals don’t even have the nursing staff to be able to allow this ‘close’ monitoring. So very few hospitals are capable of doing this and all are out-of-state.
Unfortunately, this illness has literally drained us emotionally and financially. Not only do I need help with paying for the actual major surgeries and procedures needed to save my life, but I need help in just managing the illness on a day-to-day basis because without this ‘management’, I will die anyway. I am on countless medication and besides it being extremely expensive, it isn’t all covered by insurance, as some are not on the plan and some are received outside of the USA. Even the ones that are covered have costly copayments and of course they add up quickly. For example, just to be on the medical marijuana, it costs me about $500 a month.
Just to keep me going, I need to take constant medication, which is over 50 pills daily and I even take multiple injections. These include Morphine, Dilaudid, Nucynta ER, Ketamine, and Marijuana 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." I even go every week for ketamine infusions, blocks, etc. because the pain from these illnesses and to control the dysautonomia is too great. The medical bills are way too great and donations are much needed to help pay for these costs just keep me functioning and alive day-to-day.
I also have numerous doctor appointments, procedures, etc. which are not always covered by insurance. I must keep a calendar just for them because I can’t keep track of all that I have. Basically, a day doesn’t go by that I don’t see a doctor or have a procedure. Unfortunately, since my disease is so rare and ‘special’, most of my treatment team is not in the local area. Some of my team is in Manhattan and they stretch to across the country to as far as California. So not only do I have to see them, but I must have money to pay for all the traveling expenses as well. We also must worry and consider all the time my dad must take off from work when my dad is with me at appointments because that is worktime that he is missing and essentially income that he is not making. Therefore, we take a double hit because we are being forced to pay for appointments/procedures that we can’t even pay for to begin with and yet dad isn’t even working to make the money be even able to try to pay for it because he must take me and be there. Even when they are covered by the insurance, it is not fully covered, and the copayments quickly add up as well.