A Rae of Hope

My Blog:https://araeofhope.wordpress.com/ My Story:In October of 2012, I was no longer the typical 14-year-old girl, I was a girl whose entire life was altered because of a terminal, rare, un-diagnosable virus that attacked my nervous system. I went from having the subconscious ability of walking across campus, to being exhausted by the time took 10 steps to the bathroom. But this was only the beginning of my battle. I started having trouble digesting food and began vomiting everything I ate, including water. I was consistently in and out of the hospital for 18 months, spending holidays and school days away from my family and friends, and adapting to life as a disabled patient and in a wheelchair for most of my sophomore year of high school. Instead of enjoying the holiday of eating until you no longer can breathe and enjoying family company, I had a NJ nasal feeding tube implanted through my nose into my small intestine and hooked up to a pump to manually feed me for survival. By the 5th month with the tube, my body was no longer accepting the feeds and my liver and heart were beginning to fail. I underwent every single medical test possible to find out what was wrong with me, but no doctor could find an answer. February of 2014, I was told I would “most likely never recover” and I was “a very rare case, the only one in America with my condition.” My family and friends were faced with the harsh reality that they could lose me. My heart aches as I remember the words my brother said to my parents that day, he cried to my mom, “I’m so scared of losing my sister. I honestly think she is going to die.” In hopes of restoring function of my organs, I was scheduled to get a permanent feeding tube surgically implanted into my stomach. I would be 16 years old and never enjoy a peanut butter and jelly sandwich again or wear a beautiful prom dress because there would be a hole cut in it fo my tub Miraclously,he day efore sgery, y gastrdoctorcalled my momand said shehad conferre with specialists around the US and there was one experimental treatment they could try. My surgery was canceled and I endured 3 weeks of intensive inpatient treatment that had never been practiced on any patient at Rady Children’s San Diego, but saved my life. I worked with numerous specialists, retrained my body how to eat, and even though it took me 2 hours to eat a meal, I slowly worked my way from a cup of water to a peanut butter and jelly sandwich. March 19th marked 2 years since I began my life as a survivor of the unimaginable. Rady Children’s of Children’s Miracle Network Hospitals helped give me my life back and it is my goal to support the sick children that are fighting for their lives, as I speak on behalf on current patients,survivors and those who have passed, in appreciation for the organization that strives to save lives and enrich the futures of our youth.