FAIRMONT, W.Va. (WVDN) – U.S. Senator Shelley Moore Capito (R-W.Va.), made a stop in Fairmont, W.Va. at the book signing of “Winnie’s Big Day,” a children’s book written by 11-year-old Winnie Stanley, a resident of Cheat Lake, W.Va., who was diagnosed with Spinal Muscular Atrophy (SMA) at 18 months old. “Winnie’s Big Day” is a story Stanley hopes will help other children facing medical procedures feel less alone throughout the process.
After learning more about SMA, the impact the disease was having on Winnie and others, and a recent SMA biomedical breakthrough, Senator Capito advocated to ensure access to a life-changing SMA treatment which had been recently approved by the U.S. Food and Drug Administration. As a result, Winnie became the first patient commercially dosed with the treatment in March 2017 and inspired continued advocacy for SMA newborn screening across West Virginia.
“I have known Winnie and her family for a long time, and I have seen firsthand how strong they are. I am so proud of her for writing such an inspiring story that will help kids feel a little less alone,” Senator Capito said. “It was wonderful to see her and her family and celebrate this amazing book. Winnie has come a long way, and I am excited to see all that she will continue to accomplish.”
“My goal with ‘Winnie’s Big Day’ is to help as many kids as I can facing their own big day not feel so alone,” Winnie Stanley said. “I hope sharing my story can give other kids courage when they’re going through something scary and remind them that there are so many people cheering them on. If this book can make even one child feel a little braver, that would mean so much to me.”
