Hello, and nice to meet you! My name is Jessica, but most people know me as Jess. I’m a small town Canadian girl with big dreams and an even bigger heart. I have Moebius Syndrome, and I’m proud of it!
When I was born twenty one years ago, a knowledgeable paediatrician was able to trace my symptoms to a diagnosis of Moebius fairly quickly. However, since very little was known about the syndrome at that point, my parents were given an awful prognosis. Their first baby would never walk, talk, eat on her own, of live a normal independent life. From that day on, my story of overcoming obstacles and exceeding expectations began.
My early childhood certainly wasn’t an easy one. I endured a total of twelve operations including the smile surgery, as well as numerous procedures to help correct my crossed eyes and club feet. Like many individuals affected by Moebius Syndrome, I was a huge target for countless bullies. I can remember being purposely asked questions by other children just so they could near me talk and have a good laugh at me. At one point, I vaguely remember being chased around the school yard by a boy who wanted to hit me with a stick. In any case, I began to feel like I stuck out horribly wherever I was. During some of my worst times, I’d wonder what the point of carrying on living was. Why did God create me this way, and how was I supposed to live the rest of my life being so different?
Fortunately for me, I was born into a family that can only be called amazing. They always seemed to know without a doubt that I was capable of everything the rest of the world was, and when around them, I was usually able to forget that I even had any differences. They never stopped having faith in me, even when I didn’t have faith in myself. My mom worried and fought around the clock for my successes, and the person I am today is largely the result of her constant nagging, love, and support.
When I was in the fifth grade, I met my first “best friend,” who remains a special part of my life today. Like me, she was quiet, shy, and no stranger to the hardships in life. She thought I was beautiful the way I was, and never put up with anyone telling me different. We hit it off immediately, and with the exception of the odd bully, school became pleasant, and time started to fly by.
When I was in the eighth grade, as a class project, I composed and delivered a speech about my life with Moebius Syndrome. It not only earned me a lot of respect from my classmates, but also an honourable mention in two public speaking contests. To this day it remains one of the most memorable moments of my life.
My high school days were busy, and I actually found myself having fun. I became a part of a group of five awesome girls, whom I’ve remained close to. I quickly found out that while the social aspect of life was difficult at first, once people got to know me they often found me to be a very likeable individual. During those four adolescent years I served on student council twice, was an avid member of the art club, and wrote for the school’s literary magazine.
After graduating high school with honours, I continued on to community college, where I earned a diploma in Biotechnology. I made cherished friendships, and loved interacting with many people of different backgrounds and cultures.
Presently, having decided industrial Biotechnology and factory work wasn’t for me, I made the decision to move out of my parent’s home. I currently am a student of Medical Laboratory Science at a reputable college about three hours away from where I grew up. Through my love of science and learning, it has become my dream to assist in the diagnosis and treatment of patients in the hospitals I was once terrified of.
Because of the nature of my education, I have taken many different courses exploring the evolution of stem cell research. After studying such heavy material, there are times when I have either been asked, or have caught myself thinking “what if?” What if in the future, stem cell treatment could regenerate damaged nerves? Would it be something I would consider?
Surprisingly, on most occasions my answer to this question is simple. No. You see, having Moebius has become so much a part of who I am, that I feel like I just wouldn’t be “me” without it. Even though there were many hardships, there were so many more times that made it all worthwhile. The places I’ve travelled to attend conferences, the many amazing people I’ve been able to meet, and knowing how many people I’ve inspired with my story have been well worth every tear shed in the past. Growing up with Moebius Syndrome has taught me so many things. Courage, strength, forgiveness, compassion, understanding, and acceptance are just a few. In today’s often unstable society, these are qualities that make a person stand out from the crowd in a good way, and I am grateful and proud everyday that I posses them. This is a message I am privileged to spread.
Thanks for taking the time to read my story.