Hello. My name is Kelsey, and I am 20 years old. I was born with Moebius Syndrome. It was diagnosed about a month or two after my birth, I believe, My Granny has told me this story lots of times, that she was baby sitting me one day and she had to feed me. I had a hard time swallowing I guess so she was scared that I was going to choke. Obviously, I’m still living so I credit her with that! Hehe. I could make this story about 50 pages long because I have 20 years of history to tell but I will try and make it short so i don’t lose anyone from boredom. Having Moebius is not something that I used to talk about. I actually felt awkward mentioning the name. It just wasn’t talked about, and I guess I just didn’t want to acknowledge the fact that I was different. I still have a hard time with that, but I it’s something that you can’t just will it away. It’s here for good so make the best of it. I always got asked if I was in a special program at school, or if I had an aide. I always got kind of indignant and defensive when I got asked. Like, NO. I did not. I was in English 30 in grade 12 which is the most academic English class in grade 12 here. And I did pretty well, as English was always my favourite class. I never had a tutor, aide, special help or anything of that sort. I’m not saying that having help is bad, I’m just totally tired of people being prejudice and thinking that because you look different, you have mental problems. My mom tells me all the time that I started reading before my sisters did. And I remember distinctly reading a book about Balto the dog when I was about 6 and pronouncing the word diphtheria. It was apparently a big deal, and everyone was like “Wow, she just read that word!” like I was a scholar. I always loved to read and used to hide in the library at school at recess when I was supposed to be outside so that I could read.
I always loved to write stories and essays, which was why English was my favourite class. I am now taking a Biology class and I like it. I can’t wait to get to the Human Systems unit. I am very opinionated, and anyone who is a friend of mine on Facebook knows this. I feel like one of my life callings, if you will, is to help people. The Alberta Children’s Hospital was literally like a second home to me growing up, I spent so much time at doctors appointments, speech therapy, surgeries, in-patient stays, etc. I always donate to them and the new ACH is the most amazing hospital. Anyone who has me on Facebook knows that I am trying to plan a fundraiser to help send people to the Conference next summer. This is in writing now, with witnesses, so I have to make it happen! I hope that I can look back on this letter/story thing in 20 years and say “I wish I knew then what I know now.. that the fundraiser was a huge success, etc”. I will wrap this up by saying I actually feel kind of blessed to have Moebius. Yes, it has made my life hard at some points, but it has also made me a more compassionate person. I don’t judge or make fun of others. If people could just see what it’s like to be made fun of or judged for looking different, they wouldn’t do it. Or maybe they would, which is the sad thing. I feel like those of us who do have things that make us different will change the world, we will make people understand that we are all human beings and that we are all equal. Special needs, race, sexual orientation, tall, short, etc don’t make us different, they make us unique. We are all equal. So, enough of me being all preachy! If there is one thing that I would tell young kids that have Moebius is that.. you’re not different. Don’t even give up, don’t ever let someone tell you that you can’t. The most important thing that I want kids with Moebius (and everyone with Moebius) to know is that you CAN do anything that you set your mind to. You can, and you will. I am just beginning to figure that out and I am 20 years old. There are things that I want to do in life and I won’t be held back by this.