The story of Paige
At the age of 10, I started middle school and was a shy girl. I was always the best water for my parents and a little more mature than the other kids. They thought it was an eating disorder at first as a result of bullying. I went from 108lbs to 79lbs within a few months. There was no explanation I just could stop regurgitating all my food when eating. They checked everything sinuses, bowls, stomach, viruses, infections, I did get a case of pneumonia which was odd. Finally, the last thing they decide to check is my Upper G.I. Tract and there lies the epic flaw. Immediately before even finishing the test they knew my fate. I was to forever be a fighter of the rare disease of achalasia. They say mine is not a genetic case, but a case of my cells attacking the wrong cells when sick as a small child with Rosiola. It obviously was always there it just didn’t start to show symptoms til I had gone through puberty. Typically, they find it in older patients, so of course with its rarity my pediatrician had no clue. I’ve had 15+ dilations, 2 heller myotomys w/Nissan fundiplication. The second attempt however led me to a close encounter with death at the age of 14. I perforated after the surgery and went septic. I had fluid in my kidneys and lungs and many infections. I was put on a ventilation in the icu for 21 days. I spent 3 weeks on a recovery floor where I learned to walk talk write bathe etc all over again. I missed thanksgiving that year and barely celebrated Christmas as I was weak and weening off the pain killers. I had a temporary stint put in as a trial to try to fix the tear. I now am a 17 year old senior in high school and truly involved with everything at school. My positive attitude and spirit towards life gives me strength. I hope that one day we will find a cure but until then I remain a vegetarian and struggle with acid reflux as well as painful spasms and occasional paralysis. I eventually will have to get my whole esophagus out since everything else seemed to fail.