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Day 3 of #30daysofMD When my son was 17, he came home from school one day and very casually said, “I haven’t been able to see out of my left eye for four days.” As I flipped out and asked why he hadn’t said anything, his reply was, “I thought it would go away.” He saw a retina specialist the next day and was diagnosed with Coats Disease in January of 2012. Fast forward to 2013 in a Facebook group for Coats Disease. A mom posted just one sentence. “My son’s doctor wants him tested for FSHD.” Being fairly new to Coats, I didn’t want to look dumb. So, I googled it. Every single symptom I saw fit my kid. Every. Single. One. After arguing with my son’s pediatrician, who had never heard of FSHD, I asked for a CK blood test. His reply? “Your son already has one rare disease; the odds are a billion to one that he has two.” I don’t care. Test him. His numbers were abnormally high. Momma Bear won. He was diagnosed with FSHD (Facioscapulohumeral Muscular Dystrophy) in 2013 at age 18, three months before leaving for college. In 2017, I found a painted rock while I was out for a walk. An idea immediately came to my mind. I can spread awareness by painting rocks with #CureFSHD on the backs! Brilliant! I hide them in parks, on trails, at the doctor's offices, in stores, random places every single day. I have painted thousands of rocks and they have traveled all over the world by FSHD patients & their families, researchers and friends. After two years, I feel that I have grown through my painting, and I am proud of what I do. After much discussion, encouragement and a leap of faith, I launched myself with a new title. Artist. ‘Painting to Cure FSHD’ trivets are being sold in my home town at The Locals Store. 50% of my sales go to FSHD Society. In 2018, I launched FSHD Society’s inaugural Pacific Northwest’s Walk and Roll to Cure FSHD Washington, which raised over $22,000. This year, the walk is moving to Bellevue where we are expecting a bigger crowd and have loftier goals for fundraising! The walk is scheduled for October 6th, 2019. Come join us to help raise awareness and money for research – treatment and a cure!
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