Misdiagnosed; 8+ years of hell

For over 8 years, my friend Natasha Sylvain a.k.a Tasha has been struggling to live. Doctors first misdiagnosed her with having Myasthenia Gravis disease and prescribed her medicine to help her. Unfortunately, that showed no progress. Then, she went to see a neurologist and he believed that she may have had a cranial bleed from the car accident she was in a few years prior to taking the exam. The MRI showed that she did not have a bleed in her head. She has done every lab test known to man except for the one that points to her getting better. The worst thing in the world is being sick and not having any solid answers as to what's causing it and what can be done about it. Not knowing is truly the worst part of all this. Doctors look at her with sad defeated eyes unable to help her with a true prognosis as this disease eats at her everyday. This illness has resulted in her being malnourish. Before she was sick, she was 200lbs and now on a good day she weighs about 90lbs, she is half the size she use to be, literally skin and bones, with tons of loose skin on her current frame. She is a living skeleton that has to rely on others for help as she awaits her fate. She uses a walker with a chair attach to it. As a result of the walker, she has a slight hump on her lower back. Her illness has truly left her incapacitated. She is not capable of doing regular everyday activities. Once a woman who prides herself in taking two showers a day, now she sits in her own funk for days waiting for a nurse who comes once a week to assist her. That's the best medicaid is willing to offer her. Her mental state altered because of the reality of her existence. She sits depressed, a prisoner in her own body. At night, she lies in bed with her hands over her face to hide her tears, crying herself to sleep everynight over her inability to control her current circumstances.
         At the age of 12, she stepped up and became a nurse to her dying mother and a mother to her younger siblings. She always made sure everyone in the house was well fed, also, that her siblings were doing well in school and attending church every Sunday with her. She always kept the house clean and the environment relaxed. She didn't want for her younger brother and sister to feel stressed over their mothers' grave situation. She watched as her mother began to fade before her eyes and her father take selfish trips back and forth to Haiti(clearly cheating on her mother with a woman from Haiti). Like Tasha, Doctors also could not diagnosis her mother's illness. Does that mean Tasha's fate is sealed, and like her mother she to will die? I can only hope not but their conditions are very similar. Moreover, when Tasha turned 17 her mother passed away. This left Tasha and her family devastated. After her mothers' death, for the next 6 years, she continued to watch and take care of her siblings and father. Her father then took a couple trips to Haiti with a new child in hand each time he returned back to the states. So she got 2 new little sisters, whom she loves like her own kids.
        I met Tasha at 21 (a time in my life when I really needed a good friend), during her senior year of college. I still remember that day, she wobbled over to me on crutches and gave me a big hug like she always knew me or something. She told me she was in a really bad car accident and was lucky to make it out alive. Like that, she accepted me for me and not too long after we became really close friends. Moreover, I got to see her take care of her siblings first hand(whom she loves so much and would do anything for). As well as, lead a dance squad with the children from church, all while on crutches, kinda impressive I must say.
        Tasha was kicked out of her home at 22 by her father for standing up for herself for once. You see normally, when her father's on a rampage she would cower quietly in the corner, while her younger sister would spat back and forth with their dad. She never ever spoke back to her father. She bent over backwards for him, except for the day when she finally stood up for herself which resulted in him kicking her out. I have my theory that because Tasha isn't his biological daughter he thinks he doesn't need to care for her, and so he doesn't. She had no place to go, so I let her move in with me. We shared an apartment together and I saw how responsible, reliable, self-disciplined, self-motivated, and driven she was. She had her Sunday routines, which included: cleaning, shopping for groceries and church. I saw her graduate from FAU with a degree in accounting with dreams of becoming an accountant and marrying an accountant(according to her, so they could work on spreadsheets and other accounting stuff together, she was funny that way). She made me laugh and brought so much joy into my life. This version of Tasha kickstarted me on my own little journey of self discovery. She truly had my back. And if you were a friend of hers, she'd have your back too and although, she wasn't living at home she was still there for her siblings 100%.
        Moving on, everything with Tasha seemed peachy until it wasn't. I didn't know something was wrong right away. I saw very small signs of change. For example, she started becoming easily irritable. That's unusual because I saw her deal with belligerent kids in the past with nothing but patience. For instance, She led a youth dance squad between the ages of 8-15 at her church and never once did she scream at those kids. I once told her she needs to be more firm and demand respect from those bad ass kids and she just shrugged it off. Needless to say, it's not like her to get angry or be rude to anyone. However at the time, I assumed her rudeness with my guest were her being possessive of my time and jealous of any new friends I made. But what eventually led me to the decision of moving out was her rudeness towards my brother.
        I did still meet up with her from time to time after we parted ways. Through the course of just one year I noticed her health continue to decline. It freaked me out to see her losing weight and her hair. We had no clue what was wrong with her and Doctors weren't sure what it could be either. Despite not receiving any real solid diagnosis, she did not let that deter her, she kept on trying to get better. However, her current roommate situation didn't seem to help and caused Tasha tons of stress. With her health being in jeopardy, I decided maybe it would be good idea for us to move back in together. So we did.
Living with Tasha prove to be even more difficult the 2nd time around. Her health made it hard for her to do everyday chores. She eventually lost her job and had problems keeping up with the bills. All the while, she continued to fade and get worst. She was having problems balancing and her speech slowly became incoherent leaving her mostly mute. Things she would routinely do easily became daunting tasks for her, and often, my brother and I found ourselves cleaning up for her. So once again, I found myself wanting to move away from Tasha, but this time, I wanted to help plead her case to her father to let her move back home. I have never met a more heartless person in my entire life. As we sat in this man's house, and he gazed upon his daughter clearly looking deathly sick, refusing to let her move, he turned a cold shoulder, and hasn't helped her at all since he kicked her out. With no faith in her father to step in and care for her, I felt hopeless.
        Since 2012, Tasha's been kicked out of 10 homes, including a third attempt at my house. At most of those places she paid rent to sleep on the couch cause a room wasn't available to her. You see, people have tried to help her but the burden of helping someone that ill has been difficult and no one wants to have to carry the cross alone, including me. Some people don't like the idea of having to wake up to a corpse everyday. Tasha's circumstance is seen as a burden, and no one wants to spend their time helping her especially, if they aren't indebted to you. So as kind as people initially want to be towards her, in the end, it's hard to care for someone who relies on you for everything. You see in Tasha's case when she was younger and cared for her mother this way for 5 years, it was nothing, because she loved her mother dearly and would do anything for; that makes sense cause a handful of us would do the same, but that kind of love is on a different level, and unfortunately Tasha doesn't have that love and support from anyone. We all do possess that kind of unconditional love; it's just hard sometimes to extend it to a total stranger. You would think that at least her own siblings would step up, sadly this is not the case. Her siblings, have long stopped helping, and now she's completely alone. No family, No friends, No one. Overall, she has been living the hard life, dealt the hand of a beggar, not by choice but by circumstance.
         Unfortunately, I arrived at my state of awareness kinda late in life, otherwise, I would have tried to reach out sooner. Fortunately, there does come a time in life where you realize you can no longer just be a bystander in this big blue/green world, you feel the beat in your chest to help someone in need, otherwise you suffer from restless nights and it affects you're entire being. That's where I am now and I can't sleep until I know she is ok. With that being said, Tasha is at her worst. She is literally the walking dead. She is unable to shower herself and she needs care now; the government has been slow to give that to her. The money you give will go towards providing Tasha with the proper consistent help she needs. Also, hopefully enough to give Tasha a stable home to live in. If you're a Doctor or someone with some background knowledge in health and you would like to help by giving a crack at what might be wrong, that would also be very helpful. Words of encouragement will also be appreciate to help lift Tasha's spirit and give her a sense of an extended family that cares for her deeply. I love her so much and I don't want to lose her. Thank you all for reading her story, namaste.
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Organizer and beneficiary

Julia Jeanty 
Organizer
Boynton Beach, FL
Natasha Sylvain 
Beneficiary
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