The statistics say that fewer than 200,000 people in the United States of America are diagnosed with Marfan Syndrome every year. There're around 319 million people in the United States. The odds are generally in the favor of not having Marfan Syndrome, yet this rare disease has woven itself into my life in ways that I cannot ever separate from. When I learned that the probability of being diagnosed was a 1 in every 1,595 people, I was angry. I was furious that our family had been subject to such bad luck. I was heartbroken that some rare disease had stolen my father away. It took my father, and then it sunk its ragged claws into my older sister.
Amber,
The doctors say that there’s something wrong with your heart, yet you have the kindest heart I’ve ever known. When I was young, I did not understand what it meant to have Marfan Syndrome, but I knew that you were tall and looked like our father and at the time I was jealous of that. When I grew up more, I began to realize that what I was jealous of, was what you were terrified of. While I saw your height and thin fingers as beautiful, you saw it as a symptom of a disease that only you out of 1,595 people had the displeasure of being diagnosed with. I watched kids on the bus make fun of your height, and I watched you slouch your shoulders in shame. These days I hope that you straighten your shoulders when immature boys make comments about a body that they do not know the story of.
I looked up to you my entire life, and I saw the many sides of your diagnosed heart in every light possible. You were strong when I was weak, and I can never thank you enough for the many times you protected me from the cruelties of the world we lived in. It was in these moments that I saw the brightest side of your heart, the selfless and compassionate side of a heart that doctors only saw as diseased. It was in these moments that you were the only person able to bring a smile to my expressionless face. The doctors could only tell us that you had Marfan Syndrome, they never told us that you would grow up to be open-minded, caring, intelligent, beautiful, responsible, respectable, and so many more things that I can only hope to be one day.
You have, and will, overcome many obstacles in your life because of the heart that beats inside your chest. I admire you so much for all that you have done with your life, and I am constantly on the sidelines as I cheer you on. You and your heart will always be the reason for the smile on my face, and there are no words that could even hope to express how much I love you.
To me, you are so many things. You are my big sister, my first friend, my confidant, my protector, and the reason that my own heart beats. You remind me day after day that a diagnosis is not a character trait. You are kind, smart, beautiful, and admirable. You are so quick to offer help to those who need it, and you follow your dreams without waiver. You work hard and honestly. In all your endeavors you have remained unique, and you have always refused to change yourself no matter your circumstances. You are amazing in too many ways for me to articulate.
You are so much more than a diagnosis.
