my medical funds

As a young child I was that kid who was smiling,happy,healthy... I went on play dates,pulled pranks,invited to events,fell in love with blues clues and really good friends but nobody knew what was going on not even myself.  I was a skinny blonde girl with blonde hair and blue eyes no one really thought more then that but as smart and friendly as a student I was always rolling my eyes and caught not paying 100% attention but you know most seven year olds are like that cause they are annoyed at the teacher or hate parents rules. My parents took me to a psychiatrist hoping for  some change not crossing my arms and rolling my eyes they  even got me on medication they thought I was a drama queen or acting  out early or whatever.I was seven years old,so about twelve years ago,petite mals became my biggest issue.I was thinking same thing when they prescribed me to Lamictal and why? something wrong with my brain or if you want to be all fancy about it   repeated seizures and were caused by sudden surges of electrical activity in the brain.From then forward people including family treated me strange. I would get questions like what is wrong but every time I tried things got worse.  I was ten and my mom took me to a bizarre movie with three spy guinea pigs and mouse very weird anyways I got out of my seat to use bathroom and out of nowhere fell in the aisle peed myself had no control it was my first Grand mal seizure but my mom never heard of it so she yelled in theater does anyone here have medical experience. This big lady got up screamed turn on lights and get water which was stupid cause that makes me choke.I hadno control I only remember the audio of it. I have a fear of movie theaters now cause it was so embarrassing but thought it was a one time thing but there were those mean girls in school who legit made a video of me seizing on ground in school. I was unhappy even stayed home for three days these girls got expelled and took it down but in school happened several times again I got these myoclonic-tonoclonic,grand mals and petite mals. I had always been bullied about my disability until about a year ago when I switched high schools but I still feel the emptiness of not being able to drive,stay up late or even walk alone without somebody watching me.When I moved to New York and started in a new school.Small differentiations between my friends and I bothered me like being able to drive, classes being easier for them, being able to take a walk on their own, not having medication and growing up even things as small as going to a movie theater were too dangerous. I knew it was for the best though if I wanted to be healthy. My seizures used to give me strong frustration and sometimes it does but I knew things would be okay in the end.Although I had faced many challenges such as being bullied because of my disability, being different from others and having memory lapses which caused me to not do certain tasks well, I needed to deal with the fact that I could not achieve some things and lacked the ability to learn properly. No seminary which has been a dream and can't go to college far so I'm disappointed but you know I have knowledge.Over the years I have found seizures can be set off by many things such as lack of eating, drinking and sleeping a regular amount of hours, missing a dose of medication, even flashing lights. Seizures are the scariest things I encounter because I am never sure when my seizures will happen. Most teenagers are worried about appearance or grades, when each day those things feel quite small to me. My biggest fear is if I were walking with a friend, I might have a seizure and be injured and they would be clueless of what to do. I went to several neurologists who took many tests such as MRIs, CT scans, an EEG and various other tests.Every time there is a school event or I go somewhere, I need to bring my medication. There has never been one that explains it all but they use me as a lab rat I feel sometimes I have had every medication in the book apparently by age fifteen. At sixteen I was training for a marathon and speaking with my mother on the phone and collapsed on sidewalk miracle no concussions. At seventeen SUDEP had become my diagnosis which means these seizures can potentially kill me. I could not stop seizing for about an hour and ended up in a hospital AGAIN and now I Know most doctors names and have been to about 10 different hospitals in U.S.A. some which gave me medicine that knocked me out for weeks,made me forget years of my life got me sick etc.  
When I was eighteen,I had to go through the most painful seizure I have ever had...I was training the whole year to train for half marathon in Miami Marathon so I went despite the difficulty for me to run for kids of courage and my happiness I was ready to run at 4am and I hit half a mile stooped to take my five different medications and dropped on the floor but caught myself; sitting on side of the road with my counselor and two friends I was crying hysterically because I didn't get to do the run after 1 and a half miles I dropped it hurt my heart cause I was trying to prove myself and help others but I didn't sleep enough. I am ashamed to this day but am proud of all my friends who got to the line and am happy that I have the friends I do to support me. Especially Kids of Courage which has gotten me through everything.When I was nineteen I decided with the help of Kids of Courage and months of other helpful resources. I got through my next hospital visits.YES visits with an S meaning multiple let me explain. I had a seizure during fall semester it was to hot so my side effect was seizures which meant alot I lost freedom,ability to move on my own(EEG) ,privacy,school and my job due to the seizure and it felt like the world crumpled on my shoulders. They messed around with medications and time I had uncontrollable seizures but Methodist found only anxiety attacks so I was transferred to NYU they found three seizures and an uncountable amount of anxiety attacks.That is why when I was offered to do the half marathon I wanted to get up and help others because that is the reason I am around today. It took 3 hours and alot of fundraising around 6,300 dollars but I crossed the finish line,helped an organization raise money and showed my seizures who is boss on January 29th 2017. I ran another few inthe past few years. They have changed my life and I do not know where I would be without them.I train two hours three times a week so I can do better and so my lungs don't suck(side effect of medicine). A week or two ago I was once again in college I finished all my classes and was waiting for access a ride I went to plug my phone in next thing I know I am peeing on the floor unresponsive peeing on the ground I had been rushed to Coney Island Hospital was there until 3a.m. then was transferred to Cornell and Colombia 72 hour EEG. They have not shared any information with me yet. I was very recently in the hospital and once I was discharged I got very sick to a point I needed to use canes and went blind and couldnt sit up the hospitals said not much.But I had friends from Kids of Courage help me do alot including smile three days later I was okay I am now in college.I couldn't give back what KOC has helped me.School and Kids of Courage must have been the only thing that kept my head in the game I am 20yrs old right now with a surgrey in a week It cost my familly alot of money that we frankly cant afford  during the summer I am scared my family will not be able to pay bills and for my recovery but I have people who helpme push through emotionally but any amount of money would help my family or sharing this could make a difference THANK YOU <3

Donations ()

  • Anonymous 
    • $250 
    • 22 mos
  • Esti Knapp 
    • $30 
    • 22 mos
  • Miryam Golding  
    • $375 
    • 22 mos
  • Anonymous 
    • $118 
    • 23 mos
  • Ben Taplin  
    • $50 
    • 23 mos
See all

Organizer

Malks Tom Sky 
Organizer
Brooklyn, NY
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