Ian Coomes - Marfan syndrome


Hello my name is Ian Coomes, though I prefer to go by Link. I am fifteen years old and both suffer from and am here to talk to you all about Marfan Syndrome. I was diagnosed with this disease only a few months after my birth and my family was fearful of what it meant for my future. Throughout my childhood my mother was ever-watchful of the dangers around me and despite her best attempts I did realize there was a difference between the other children and I. They all ran around the soccer field for an hour while the gym teacher told me I had to sit out after merely half the class. I didn’t suffer any trauma from sitting outside of the class but I was clearly treated differently.

As I grew older I of course had no trouble making friends due to my ever-noticeable charm. I found while I was lacking in my physical attributes I was able to worm my way out of most of my problems through the use of humor and guile. Whenever I was mocked by another for my health or appearance I would simply throw back a witty comment. It is important to be proud of who you are, regardless of what others choose to say.

Furthermore, I found there was more to my skills than waning off the unfortunate bully who dared cross blades with the wit of the fabled Goliath. I learned that I excelled in nigh every academic subject I tackled. I am interested in the etymology of many languages, I have worked hard in the sciences and I am currently working my way through grade 12 AP math. I may be 2 years younger than almost every other student but even there I’m a sight to be seen; be it because of my affinity for mathematics or the fact that I look a year older than the eldest senior.

Through my studies into academia I found others like I, unable to perform physically, albeit by choice, but excelling in their education. I learned of different games, like Dungeons and Dragons or Munchkin, a surprisingly enjoyable card game. I found that there are entire communities made of my people, we the geeks united stood, a sore thumb to society but ever cheerful to one another! I attended conventions, discussed comic books and soaked in every part of this new sovereign. Everywhere I turned I found something to spark my interest; Lord of the Rings, Star Wars, Batman and most importantly to me The Legend of Zelda, a top selling video game series.

Now I probably should state that my story may be slightly embellished, I was destined to be a geek since birth and The Legend of Zelda has been a part of my life throughout. The game follows the tale of Link, a courageous lad, as he travels across the land, saving maidens, battling monsters and other such things that heroes must do. I adored the character so much that to this day he is my namesake. The entire point of the games is that though the legendary heroes lacked power they could always succeed through the use of wisdom and courage.

The purpose of this spiel is not to speak of how wonderful it is to be a geek but rather to stress that I overcame my condition. I persevered past the restrictions of my feeble bones and broken heart. It doesn’t matter if you can walk or run, it matters what you choose to do with what you have.

Now just before I go, I fear that this speech may get back to my cardiologist so to avoid the turmoil of explaining why I didn’t, I’ll tell you all that I’m not inactive, regardless of what this speech may have suggested. I do archery, I am part of a walking club at school and much to my chagrin my mother forces me to swim twice a week. I don’t particularly enjoy swimming but it keeps me healthy until further advancements can be made to help Marfan Syndrome and related disorders. The Canadian Marfan Association (CMA), now known as the Genetic Aortic Disorders Association (GADA) Canada is here to do just that. Through them we all have the chance to do everything we want to do and more, both before and after a cure is found. The entire CMA/GADA has always been kind to my family and I know if ever I was in need of something they would always be willing to help.

On that note I will say thank you for listening and to quote a favorite series of mine (Vulcan salute), live long and prosper.