MY STORY

It all started when I was about 6 years old, when everyday, I was complaining about a new injury. No one ever believed me. I went from brace to brace. All my friends called me the “broken girl”. One day I slipped in school and that was it; the start of the rest of my life. 

I could hardly walk but, again, my parents didn’t really believe me and my sister called me an attention seeker. One weekend during a family dinner the pain overtook me. I let out a scream. I couldn’t walk. My dad seemed mad and my grandparents confused. We went to the emergency room but the X-rays didn’t show anything and the doctors said nothing was wrong. However, I knew something was. 

My parents and I went to one doctor and then another and another. Some thought I had a club foot, and one believed it might be Juvenile Arthritis. It wasn’t until one doctor, Dr. Frucht, a neurologist, thought it might be neurological; a blood test confirmed his diagnosis and we found out, I have Dystonia.

In PE at school, I had a teacher who understood my situation and he let me sit out and watch. But one day I had a substitute who said, “Either you run or you go to the library”. But I could not walk all the way to the library by myself, which I tried explaining, but he just repeated himself. So I ran. It completely destroyed me. I came home that day in extreme pain and no feeling in my left foot. Either my muscles froze or went into complete. I had no control. I went to school the next day on crutches, but I was sent home because I didn't have a note. But for a few days here and there, when I  I was feeling okay, from February 2019 to January 2020 I was on crutches. 

In October 2019, on Halloween, I went trick or treating with my friends. The excitement of the holiday and wearing my gumball machine costume made everything seem okay.  When I got home I started counting my candy, and someone rang my doorbell. When I started to get up my whole body locked up and all my muscles turned off. I screamed. I have never been in that much pain before. I couldn’t move my head, my neck, my waist, my back, my wrists, or my feet. Everything was frozen. That was the first but definitely not the last time that happened. My dad picked me up and held me until I calmed down while my mom tried massaging my muscles into motion again. That’s when we decided we needed to take more action.