As many of you know, I have a beautiful little 6 year-old niece named Riley who suffers from Rett Syndrome. Rett Syndrome is defined as a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use — which is really just a fancy way of saying well probably never get the chance to see her wrestle with her brother, chase bubbles in the backyard, or hear her sing in the shower. Riley cant walk and Riley cant talk. And although her mind is sharp and her personality bright, her body doesnt allow her to express the many things her imagination must ache to do. Because of Rett, Riley is unlikely to experience the victory of a sunset from a mountain top after a long hike, and shell probably never get the opportunity to walk down the aisle on a wedding day, and her parents will probably never have the chance to marvel at the artistic work she created on the fridge, but Riley is loved. Riley is loved for everything she is and for everything she will never be. She is loved for her strength, for her warmth, and for her forever present radiant smile that leaves you with an impression that her mission here on earth is beyond your comprehension and shes keeping a very, very good secret. For those of you who follow my personal fitness page (facebook/hooperFIT), youve had an opportunity to hear me speak about how Riley often inspires me to keep going when I want to quit. She motivates me when I dont think I have the ability to push myself any further. She reminds me that I have a strong body that I take for granted on a daily basis. And thoughts of Riley often surface when I allow myself a weak moment of self-loathing. As a woman, its easy to let the pressures of societal standards influence you, and when I catch myself, I feel ashamed and embarrassed for being able to do all of the things she must only be able to dream of. So, in honor of Riley, and all of the other beautiful little ladies suffering from Rett Syndrome, Im going to make an effort to bring awareness to this genetic disorder and ask that you help me in my quest to help find a cure. I want to help Riley the way shes helped me. October is Rett Syndrome Awareness month and I ask that for any of you who are willing and able, no matter how small or large, please make a donation to an account I created at gofundme/faw8l0 For those who choose to donate $100 or more, I am offering three personal training sessions as a way to express my gratitude for your support. No gym membership required. Thanks in advance to all who participate. If youre feeling inspired, please share. *Also, in the comments, there is a link to a beautifully written article about my niece and the obstacles my brother and his lovely ex-wife, Kelly, have endured with all that comes with the territory of raising of a Rett kid. Its an excellent piece.
Posted on: Wed, 01 Oct 2014 21:33:19 +0000
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