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Amelia Rose Weaver

August 16, 2018

Amelia Rose Weaver

 

Only the lucky few get to experience the magic of raising a unicorn. They’re rare. They require vigilant care. They are brave, strong, and beautiful. They push others to change the way they see the world. Amelia Rose Weaver, 12-year-old unicorn, is no longer suffering after a lifelong battle with Scn2a. She’s most likely having a dance party in heaven. While she is missing her sister, Penelope, her favorite dance partner, she knows they will one day be together again shaking it off to TSwift, of course, in matching outfits. Amelia’s Unicorn life mission of spreading hope, and fighting on, lead her to experience a lifetime in her short years. Amelia was incredibly proud of being a part of advocating to change two laws in Minnesota so patients like her could experience quality of life. Amelia continued to share her life experiences hoping to encourage everyone around her to Fight On in theirs. Unicorns can be camera shy, but thanks to her scrapbooking picture happy Mom, Amelia learned to embrace the selfie. She thought it was pretty cool that her story was in a museum, newspapers, magazines, the news, and even on billboards. No one fights alone and Amelia always felt the love surrounding her from her family, friends, Scn2a family, therapists, nurses, doctors, supporters, and community. This support often got Amelia through the tough times and long hospitalizations. Unicorns love to travel and Amelia was no different. One of her favorite vacations was her Make-A-Wish Trip to Orlando where she got to experience some of her favorite things- Star Wars, Harry Potter, and Cinderella. Not having to wait in lines was pretty great too. Unicorns don’t believe in regrets and Amelia lived in such a way that she had none, except maybe not getting to see a Vikings Super Bowl Win with her Dad. Loving a unicorn is easy. Learning to live without seeing one everyday won’t be. Amelia asks that you continue to surround her family with love. Josh and Angie Weaver (Unicorn Warrior Parents), Penelope Weaver (Best Unicorn Sister Ever). (Unicorn Crew-Family) Grandparents, Dan and Kathy Grzybowski, Roland and Beulah Weaver. Great Grandma Joy Stoltzfus of Cowan, TN. Uncles and Aunts, Jeremy and Amanda Weaver of Duluth, Brian and Melissa Grzybowski of Hibbing, Eric Grzybowski (Miranda Black) of Destin, FL. Cousins Jack, Lucy, Abby, and Cal Grzybowski, Evan and Ian Weaver. And many other aunts, uncles, cousins, and her Unicorn Scn2a family around the world. Preceded in Death: Great Grandparents Herb and Millie Finney, Edward Grzybowski, Leon and Bernice Gladen, Roy and Helen Weaver, and Amos Stoltzfus.

The celebration of Amelia’s life will be at Open Door Church Saturday, August 25th at 2pm. Amelia’s family will be at the church at noon to receive condolences and hugs.  Amelia had an epic sweet tooth. Immediately following the service please join us for dessert (all of Amelia’s favorites). Life is short, eat dessert- Amelia would want you to. In lieu of flowers, donations for continued research for an Scn2a Cure are appreciated. All interested can donate here: scn2a.org or by mail to FamlieSCN2A, P.O. Box 82, East Longmeadow, MA 01028.
 

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