Today was Global Rare Disease Day and the teachers and Staff at K’s school participated in Global Genes Project’s Wear that you Care Day Fundraiser. They donated a total of $210 to MitoAction in honor of our sweet girl (and in honor of another day to wear jeans to work, woohoo!)!
K loved it, of course. This morning when I told her about it, she said, “So it is like MY day and people are paying $5 because they love me?!” 🙂 She personally thanked and shook hands with all of the staff she encountered who were wearing jeans. She said, “Thanks for wearing jeans for mito!” and I second that! Thanks to everyone who wore jeans today…you supported a wonderful cause, helped us raise awareness, and made my sweet little girl feel so loved! Extra special thanks go to Mrs. H for organizing all of it!
It also gave K the opportunity to talk about Mitochondrial Disease in class and she told her friends that “it is really cool and you get to do fun stuff!” While I can think of a long list of difficult stuff she has had to endure because of her rare, progressive disease; labs and needle sticks, surgeries, yucky tests, hospital trips, times when her tummy isn’t working, migraines, vomiting, fatigue, frequent illnesses, and so on…plus the daily stuff like meds, glucose checks, tube feeds, and oxygen; I am SO glad that she just focuses on the awesome stuff most of the time, like Mito Camp, Fantasy Flight, marrying her “husband” at the Camp For All Gala (which I still need to write about), and getting to know all of our sweet Mito friends. Everyone wearing jeans JUST for her is surely another item on the awesome list, so thanks again for helping create yet another BEST DAY EVER for our girl! ♥