Chronically Ill Mom Out of Options

My name is Shannon and I have suffered from ongoing medical issues for over 12 years. It started as late stage Lyme Disease, but on January 9th, 2017 my life was put on hold with several new diagnoses, and I discovered there will be no end in sight. I was blessed enough to have 2 children in between my health struggles, but now I have a 2 year old boy and 7 year old girl that watch their mother suffer daily. I've been a teacher my whole life but was informed last year I will not be able to work again, which leaves me with no income, and despite my diagnoses and a lawyer, SSI has still been denied. My mother helps as much as she can, but she is having her own issues, so our options have run out. A little about me, I have a rare condition known as Diabetes Insipidus, where I do not produce the hormone that signals my kidneys to retain water, even going without fluids for a few hours could be potentially deadly. I also have Autonomic Dysfunction, my autonomic nervous system that controls my body temperature, heart rate, blood flow, and blood pressure is damaged, which causes my body to not even tolerate standing up (Orthostatic intolerance). This has lead to POTS, known as Postural Orthastatic Tachycardia Syndrome, if I attempt to stand, my Heart Rate will jump 40bpm and can cause me to pass out. I also just discovered I have SADNI which is an Antibody Defficency, and now I require human immuglobin made from donated plasma every week. I also have a Port in my chest which is accessed all week so I can do infusions of Saline and Lactated Ringers every day, just to keep me hydrated enough, and my blood volume up enough to help keep me out of the hospital. I also have to do iron infusions often due to chronic blood loss anemia, however they have yet to find the source of my bleed so I have many test ahead. I also just recently suffered from a blood clot in my jugular vein and have to take daily blood thinners. Despite all my new treatments, I still end up in the hospital very frequently as my body is still unable to regulate itself. With all this said, I try to do my best to care for my kids, but it's hard to do things alone as I'm hooked up to infusions constantly, and something as simple as sweeping can cause me to pass out. I can no longer shop on my own, cook, clean, and have trouble even bathing myself, but I still fight for my life every day trying to give my kids the best life I possibly can. Due to no SSI (the wait for a court date is 3 years) and no income, I am really struggling just to get the essentials like diapers, soap, wipes, food, and even medical supplies and supplements (that aren't covered). Although I am lucky enough to receive some food stamps, some weeks it is only enough for my kids, and I just have to deal with not eating a meal. Our family vehicle will soon be repossessed due to lack of funds, our phones will soon be shut off which is very dangerous if I am home alone and have an episode, and we are even at risk of losing our home eventually at this rate. I live with Grandma to assist, but between my health issues, and her own, it is almost impossible to get any funds that we desperately need. I have a fiance who works hard to help support us, but unfortunately one income for 5 people just isn't enough to get by. I have tried everything in my power, I use a walker to do alot of things, but my life will never be the same. Any donations for my family are greatly appreciated, even if it is needed essential items or $1. We just need to be able to keep our family vehicle, a phone, a roof over our head, and get essentials, but no longer have any money to keep going. If anyone has anything to donate, anything at all, my family will be forever thankful. I'm not one to ask for help, but we are now in a desperate situation. I can't even afford to go to the specialist my doctors want me to see as Medicaid is quite restricting, and my medications exceed $10,000 a week. Thank you for taking the time to read this, any little thing helps, even if its a Share! My family and I need to be able to keep going despite my health for my kids sake. It's hard enough for them to see mommy so sick, but now to worry about loosing everything on top of it is just too much for a child to ever experience or worry about. After some suggestions, I made an Amazon Wish list for items we could always use. That way if anyone would like to donate items instead i have a suggestion list available. Brand is not important, I tried to just find the cheapest options in what we need that I saw available, anything, any brand, any size, is appreciated. This is the link to the Amazon list just Incase anyone is interested. Again I can not thank you guys enough! Check out the list: EDITED TO ADD THE OTHER HALF OF MY STORY, I JUST FOUND OUT MY HEALTH IS ONLY GETTING WORSE. I apologize for it being so long, but this is the story of how my health and everything started for those that are interested. I just got bad news about how extremely damaged my jaw currently is, I need another total joint replacment, but my situation is so complex, they have yet to find anyone who will be able to save my jaw, and even if they did, I would have to raise an extreme amount of funds to even make the surgery possible. Instead of making a separate Go Fund Me, I wanted to share the truth and my story on here... When I was 15 years old my mother payed people to "kidnap" me and ship me to a behavior modification program in Jamaica. I was not allowed to say good bye to my parents, let alone contact them once I arrived. This was a WWASP Program, a program based in Utah that had programs all around the states and even in Costa Rica and Jamaica. My mom trusted the internet at the time, and other brainwashed parents, and ended up sending me to a place in Jamaica where I was abused, tortured, and had every basic human right taken from me. I wasnt allowed to speak to my mom, or tell her what was happening to me, instead she was only allowed to talk to who I was assigned to, and she was fed nothing but lies. I was locked in a small room, forced to lay on the tile, face down, on my stomach all day, I was not allowed to move or sleep, I was not allowed to use the bathroom on my own, I was not allowed to learn or go to school. I was locked in this small unventilated room lined up like sardines with other kids, we were only allowed to get up to do excessive exercise not even a top athlete would be able to pull off, but if I didnt do it right, they would hurt me, and hurt me bad. At night you could hear the screams of other children being restrained, I was often the one doing the screaming, but there were also so many others. They would have multiple staff members get on top of you to restrain you, one would try to make your elbows touch your shoulders, while the others sat on your knees. If you screamed or cried, they would do it harder, if you didnt cry, they would still do it harder to make you cry. I was locked in this little room for 8 weeks at a time. The only time I was allowed out of the room was to sleep outside covered in bugs. I could go on forever about the abuse and torture that happened there, I even witnessed a girl kill her self, and we were forced to stand in the spot where she died the next morning. But the main thing that happened, along with emotional scars, is what they did to my jaw. One night when I was locked in the isolation room known as OP, I made a staff member very upset, they did their normal painful restraint, but it didnt end there. After they were done almost dislocating my shoulders, I was crying, they didnt like when I cried. I held on to one of the wooden beds hoping they wouldn't grab me and hurt me again, but then my worst nightmare happened, one that has changed my life forever. One staff member came up from behind and grabbed my arms behind me so I could no longer hold on, then another staff pulled my legs right out from under me. This caused me to fall flat on my chin, which split open immediately. I was bleeding everywhere but instead of stopping, they litterally rubbed my face in it and kept up with the painful restraint. It didnt take long to.notice I obviously needed stitches, but they waited to the whole facility was asleep so they could sneak me out to the local hospital and keep it a secret. The hospital did nothing but place stitches, and the facility never even took me back to get the stitches removed. I was brought back to the tiny isolation room, still forced to lay face down, and was told that I did it myself. Several other students witnessed that night, but the staff still stuck to their story, that I hit my own face on the floor (which was impossible to create such an injury by myself). As time passed my jaw started popping so loud everyone could hear it, then it stopped opening all together. After 1 year of torture they finally let me speak to my mom, but heavily supervised as we were not allowed to tell them what was really happening, they always told our parents that we were bad kids, manipulators, and not to trust anything we say. My mom was finally allowed a visit after 13 months (where we had to do a brainwashing seminar together) luckily she caught on somewhat, and decided to transfer me to their sister program in the states in Montana. When I got there my jaw was in horrible shape, and within a couple months I got severely ill, but since we still couldnt talk to our parents, that ment we could only go to the doctor when they decided it was ok. After that illness I went down hill even more, my health started deteriorating, and 7 years later I found out I had Late Stage Lyme Disease which they really think I got in Montana. After almost 3 years of hell, I finally graduated the WWASP program, and got to go home, but I wasnt the same, I had no social skills, I was like a robot, and physically and mentally scarred. I had nightmares constantly that I would be sent back. I finally got into a surgeon and realized just how bad my jaw had gotten, my bones had deteriorated, so they started with surgery #1 to try and fix it, it failed. I was then referred to the top oral surgeon in my state and he performed surgery 2 and 3, which also failed. The only option left was total joint replacment of my jaw joints. It was a 15hr surgery and I woke up in the ICU wishing I had never woken up. Shortly after that surgery is when they finally discovered my Lyme Disease, and I started to rapidly deteriorate. My life has been non stop medical issues since then. I have had my fake titanium jaw for 11 years now, 11 years of pain and barely any range of motion, however I just found out yesterday that my jaw is now worse than ever. I can no longer open it to eat normal food, or to even get a toothbrush back there, so I'm slowly loosing my teeth as well, as they are very damaged since I cant take proper care of them. I got a CT scan yesterday to discover i have random bone growing around my artificial joints, blocking them from opening or functioning. The bone is pressing on the artificial joints and growing around it making my jaw not functional. However my surgeon has moved to a different state and is going to be doing surgery at Havard (Something I cant afford). The surgeon I saw yesterday informed me that my case is so complex and severe, they dont even know a surgeon that will be able to fix it. I'm currently waiting as the doctor who did the CT scan tries to find a colleague, or anyone who can work on such an extreme case. I just wanted to let everyone know the real story, and how it all started. You all know how poor my health is by now, but not everyone knew about my jaw. All I ask is to share my story, maybe, just maybe, it will reach the right person and I can find someone who can fix my jaw. I'm currently terrified and feel broken, but I'm determined to get through this. It doesnt look very hopeful, but I'm not the type to give up. Thank you to everyone who took the time to read this. Here is the link to my interview done by the BBC (I got contacted by them and Montel Williams about the abuse I went through and did 2 shows). In the video the owner made the place look nice, and denied everything, but above is the real truth.


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Shannon Levy 
Pompano Beach, FL
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