My daughter Allyssa was diagnosed with Narcolepsy with Cataplexy in 2012 at the age of 12. Allyssa’s whole life has been affected. Friends, family, school, and the emotional undertaking narcolepsy creates has been overwhelming. Allyssa has grown up faster, and been exposed to more than a kid should have to be. Nobody ever talks about Narcolepsy and the suppressed emotional state it creates. Cataplexy is misunderstood. Not hearing your daughter laugh for fear of falling and being embarrassed in public is hard as a parent. Endless hours of counseling to control the anger, depression, and anxiety that comes along with Narcolepsy can be consuming. Scouring through countless websites to try to understand what is happening and try to relate what a person with Narcolepsy is going through. Looking at pictures of the care free girl who laughed and played and enjoyed life before narcolepsy is hard. Allyssa and our family have grown to embrace the life of Narcolepsy, to not let it take control of who she is by gaining education, attending support groups, and educating those we meet.
We were once asked to describe what narcolepsy meant to us in a drawing. My drawing began with reds, grays, and blacks, as my drawing continued the reds, grays, and blacks became lighter, the figure becomes happier, and in the end the cape goes on. Narcolepsy can’t be described with a single image or color. Everyone wants to get to the sunshine and cape, but this reality is far from the truth for those with Narcolepsy. Allyssa’s Narcolepsy drawing was of ET, explaining she feels like an alien who just wants to go home to people who are like her because she feels as if she is alone in a strange world but the world isn’t strange, Narcolepsy just makes you feel like a stranger in your own body. Then you go to support groups and see that you aren’t alone and eventually you don’t feel like a stranger in your own body anymore.
Some days bring more darkness than others but in the end Allyssa will always be my figure in the cape. Allyssa will be graduating from high school this year, when I saw the opportunity to do something big for her I had to apply. I would like to give Allyssa one of the biggest graduation gifts I can, helping to raise funds for Narcolepsy research. I cannot think of a better way to send Allyssa into her future than to help fund research for Narcolepsy. When the call came in that I was chosen to take on this challenge I was speechless. I am honored to be given the opportunity to help raise a voice for Narcolepsy and bring greater awareness to everyone.
As a WUNner I will help raise a voice for Narcolepsy while raising funds for research. Please follow me in this journey by donating to help fund Narcolepsy Research!
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