“Wonder” is a popular, best-selling children’s book that recently hit theaters. The story tells the tale of a boy with a rare genetic disorder called craniofacial disorder.
Sam Carlisle, mother of two, from London, relates very closely to the story of “Wonder.” She said that first the book and then the film inspired her and her family.
“I, too, am the mom of a child with a rare genetic disorder. My daughter Elvi has RCDP (rhizomelic chondrodysplasia punctata). The condition is so rare, less than 50 American children are affected,” she wrote in a human interest story for PEOPLE.
‘Wonder’ brought out the emotional side of Sam.
After reading the book, Sam was worried the movie wouldn’t do the book justice, or she would fill the entire theater with her tears.
“I cried before the opening scene of the new movie, Wonder, had even begun,” she explained.
“The tears continued throughout, not because director Stephen Chbosky and his A-list cast hadn’t managed to capture the essence of this unique, life-changing book—but because, as each scene unfolded, I realized they had.”
The film hit Sam and her family’s situation on the nose.
Sam was more than sympathetic—she knew exactly how the mother of the main character felt. Seeing such a heartfelt depiction of events she was actually going through overwhelmed her.
“The anxiety and over-protectiveness he describes in his mom sounds completely like mine. If tiger moms are the ones who go into battle for their kids at the drop of a piece of Lego, meet Momzilla, mothers of disabled children who are continuously fighting for their children’s rights and are always on the look out for bullies or starers—whatever their age,” she said.
Sam tries to help people understand her child and family.
When the family first read the book, their younger son, Sonny, said, “Mom, that’s just like our family.”
“We gave a copy of Wonder to [Sonny’s] classmates as a birthday present. It helped them understand Elvi’s disability and the sacrifices her brother has to make every day.”
The story helps show people that small acts of kindness go a long way.
Elvi op today at 1pm. Anyone who knows her will appreciate the impossibility of nil by mouth until then. I’m hiding upstairs to avoid giving her toast.
Last year, Sam wrote an emotional description on Facebook of the trials of coping with raising Elvi, and friends and family reached out to help her.
“[They] stepped forward to say they would take her out for a walk, giving us some time to relax and concentrate on her brother. They now do that once a month and we all gain from it.”
It does not stop Sam from knowing her child is beautiful.
“To me, Elvi is a beautiful 16-year-old. I don’t see what strangers see when they watch her rolling along in her wheelchair.”
Sam said that sometimes people stare at her and awkwardly look away. Sam wants Elvi to know that no matter how people react to her, she is beautiful.
“I want to say to Elvi, as Roberts’ character says to Auggie: ‘You are not ugly, and anyone who cares to know you will see that.’”