The story of Annie
I am a nineteen-year-old college student studying biology. I am also a writer, a proud author of my novel “Taylor’s Bond.” I’m also someone who has undergone eleven surgeries, received enzyme replacement therapy every week for the past ten years, and someone who lives with a rare disease. I’ve struggled to walk throughout almost my entire life, yet even now I still try and use my wheelchair only when absolutely necessary. Every day at school people offer me their help, from opening doors to getting my lunch for me or carrying my bag. I pride myself on saying three words over and over again, simply because they are truthful and I have worked hard to be able to say them. “I’ve got this.” Morquio can take away a lot of things from me. It can take away the height that I’ll never have, part of my strength, and even options that I’ll never be able to logically ponder. It can give me pain and exhaustion, make me work twice as hard for the simplest of things and ten times as hard for the challenging things. But it cannot-cannot I repeat-take away my independence. I am living with a rare disease, and I will not have anyone live my life for me. Until the day comes where there is a cure (which is what I am striving to work towards, and a great deal of the reason as to why I am majoring in biology) for Morquio A Syndrome, I will accept the challenges that life still forces my way. I won’t handle them with grace, and although I may complain each and every step of the way I will do exactly what I want, need, and have already done. This is my life. This is my rare disease. And this is my story.