BY KARISSA MILLER
Emery Guenther may be young, but she is using her voice – and personal experience — to be an advocate for people with epilepsy.
The Brawley School sixth-grader has written a book to help children better understand epilepsy, which affects 3.4 million people in the United States, making it the fourth most common neurological disorder. Individuals who have epilepsy can have recurring seizures.
Guenther, 12, has an infectious smile and a contagious attitude. A few years ago she learned that there weren’t many books for kids about epilepsy. She decided to create a resource to help others.
In her book, “Sky’s Strength,” Emery shares her personal journey with epilepsy. The book grew out of a project last year, when Emery’s teacher at Coddle Creek Elementary, Jennifer Morris, recommended she write a book for her International Baccalaureate exhibition project.
“They create questions and research something that they want to know more about within the context of (IB program) global goals,” Morris explained. “We are guiding them and directing them with five approach questions. They are thinking really thick questions — not just ‘What is this and can I google it?’ How can I discover something and then learn and take action to make a change,” she added.
Emery’s teacher describes her as “kind, smart and the reason you become a teacher.”
“Her mind is always going. She’s very creative. She’s always thinking outside the box. She thinks of others and makes amazing connections to things,” Morris added.
While Emery was writing the book, none of her classmates even knew that she had epilepsy. She concedes that she felt isolated at times because of the weight of carrying that health burden alone.
“You think of the medical side and physical side, but you don’t know how huge the trauma and emotional side is of epilepsy,” Emery’s mom, Leah, said. “We learned through her therapist the importance of communication, saying the word seizure and telling people your ‘secret.’”
“This whole process has been so healing. She’s been brave around others and to see how she’s inspiring others to be the same has been so cool,” she added.
This shift in mindset empowered Emery to speak up and become her own advocate.
On National Epilepsy Day, she came up with a fun way to tell her classmates about her diagnosis by drawing an edible epilepsy ribbon on purple cake pops.
“I feel more confident talking about it now,” Emery recalled.
She had a lot of help creating her book. Her mom, who has background in graphic design, assisted with the layout and overall design. The artwork was created by Emery’s 16-year-old cousin, Natalie Dew.
Today, Emery feels healthy, energetic and optimistic. With the help of medication, Emery is living seizure free. She is also proof that you can still live an adventurous life with epilepsy; the Guenther family’s next big adventure is hiking in Glacier National Park this summer.
The Guenther family feels closer than ever, and Emery and her younger brother share a special bond.
Her goal is to have her book in every media center in North Carolina and in epilepsy monitoring units. So far, she has visited around 15 classrooms and read her book to more than 350 students.
“I admire her courage to share this information and answer unfiltered questions,” her dad, Kyle, said.
LEARN MORE
Visit https://store.bookbaby.com/book/skys-strength to learn more about Emery and order her book.