By Esteban Fernandez
For Times West Virginian
FAIRMONT — Winnie Stanley, 11, of Morgantown, had a big day she wanted to share with other kids.
The big day was back surgery when she was eight.
“It was a really hard experience for me,” Winnie said. “So I wanted to make it a little easier for some kids.”
So Winnie wrote a book about it. On Wednesday evening, Winnie signed copies of her book, “Winnie’s Big Day,” at Fairmont State University’s Wallman Hall.
Winnie was diagnosed with type 2 Spinal Muscular Atrophy, a rare genetic disease that caused her to develop scoliosis. Winnie had to have rods put in her back. The surgery was done at Nationwide Children’s Hospital in Columbus, Ohio.
Dozens of people from the community turned out to have copies signed. Her mother, Ann, said her daughter participates in theater at Fairmont State University. When the school learned Winnie had written a book, they offered to host an event for her.
Ann said her daughter’s book chronicles her experience with surgery, from meeting with a psychiatrist in preparation to an activities calendar to her hospital stay to finally returning home and getting through the ordeal with the help of her friends and family.
“Even though it was scary, she can do hard things,” Ann said. “And it’s always for the best. Surgery, if they’re recommending it, you know, just learn as much as you can. Trust your doctors. Lean on your friends and family, and have a lot of activities planned.”
Ann said her daughter was the first one in the family to have major surgery. Neither her nor her husband have been through a major surgical procedure. She said her daughter put her experiences into a book to provide reassurance for other children shows what kind of kid she is, always wanting to help others. She said her daughter loves to write, having came up with the idea after her operation.
U.S. Sen. Shelley Moore Capito, R-W.Va., also has a personal connection to Winnie. Capito knew the middle schooler since she was a baby and has known Ann since she was a child as well. Capito said Winnie’s book connects with other kids in a way only a child can.
“You have to admit, certain things hurt,” Capito said. “And she wrote it, really, from a child’s perspective, so I can imagine parents all over reading this book to their children in anticipation. Maybe not major back surgery, but maybe get your tonsils taken out or something like that. Because the hospital can be pretty intimidating.”
Capito also played a role in helping Winnie get the operation she needed, by putting pressure on the insurance companies that were complicating the child’s ability to get an important surgery.
Winnie took a few years to write the book. The family tried going through the traditional publishing process, one of Winnie’s friends faced her own surgery urged faster publication. Winnie wanted her friend to feel less alone, so the family ended up self publishing through Amazon.
Partial proceeds from the book will go to Cure SMA and Nationwide Children’s Hospital. So far, Winnie has sold 136 copies of her book. Her expectation was she would maybe sell five.
Winnie said her surgery was effective. She faces a second one in January, for which she is prepared to write a sequel.
“She wants to make the world a better place,” Ann said. “She really does. She has such a light about her.”
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