A Raymond youth is using his experience with juvenile epilepsy to help others as they learn to live with the condition.
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| Weston Quinn. 9, of Raymond has written and illustrated a book called 'Juvenile Epilepsy Warrior' describing his experience being diagnosed with juvenile epilepsy at age 7 and how he's learned to thrive despite the diagnosis. He will be on hand to autograph copies of his book from 1 to 3 p.m. Saturday, April 4 at Play Warriors, 840 Roosevelt Trail in Windham. COURTESY PHOTO |
“It’s scary to tell the stories,” Weston said, but says that he “loved the ability to talk through my epilepsy journey.”
His mom, Hannah, said that the book has helped Weston communicate with others about the struggles he’s faced.
“It’s been amazing watching Weston use his story to help others,” she said. “He doesn’t realize how powerful his words are yet. When it comes to even talking to his friends about his experience, it made such a huge impact.”
Weston also completed the illustrations in the book, creating images that represent different stages of his diagnosis. One image shows blood in a needle, which represented the first day he had a seizure, Weston said.
Another image shows Kimberly Leighton, the founder of Play Warriors in Windham, as the pair apply electrodes to a doll to help Weston understand how an Electroencephalogram (EEG) would work.
“The artwork helped work through his fears,” Hannah said.
Leighton explained that the book was a result of Weston’s journey through child life therapy, which takes a different approach to helping children through difficult times in their lives, including medical diagnoses, grief, and trauma by providing medical play and therapeutic interventions, coping strategies and relaxation techniques.
“When working with a kiddo, we catalog their time with session notes and some dialogue, images and projects,” she said, pointing out that once a child is nearing the end of their time with the center, they have a mass of accumulated work that can be used to build a book to help others.
“I ask now that we have all of this information, what would you want people to know about what happened to you and what that might feel like,” Leighton said. “For some kiddos like Weston, they want to go on and help other kids, so this is a great avenue for kids that want that sense of agency and get to a point where they can tell their story.”
“Part of telling their story, there is a lot of healing in that,” she said. “That’s why therapeutic expression, whether it’s through art or telling a story, it helps process what you’re going through.”
Weston is one of several young authors at Play Warriors, as this is the sixth book published by the program’s participants, with another four books in progress currently. Other topics covered include childhood cancer, grief and loss.
The books are published by Books That Heal, a nonprofit organization dedicated to assisting children facing medical or emotional battles to publish their stories. Leighton explained that the book’s proceeds are split between the nonprofit and a charity chosen by the child who penned the book.
“It’s going back to the charity forever and will continue to grow,” she said, explaining that Weston chose the Pediatric Epilepsy Research Foundation to receive the funds from his work. “It’s a great way to have the book be a final capstone to his success and his work that he went through.”
The Play Warriors program also helped Weston discover more self-confidence and work through his anxieties around his condition, including going to school and interacting with his peers and friends.
“He was afraid of having a seizure at school,” Hannah said, “His friends knew he was going through something, but they just didn’t realize quite how hard it was.”
Through his child life therapy, Weston has been able to process his anxieties and fears, enabling him to face school and sports with confidence and joy.
“He carries himself with more confidence and self-esteem,” Leighton said. “He’s not looking at his diagnosis as limiting. It’s about ‘what can I still do’.”
Hannah said that Weston’s new sureness is most evident when he is interacting with the world, especially when he is playing point guard on the basketball court or as a striker and forward on the soccer field.
“We get to see his joy when he is either on the basketball court, on the soccer field, spending time with his friends and his cousins and all of his family,” she said. “We get to see him shine when he goes to school and all of the things he’s doing at school, as he had a hard time going to school for a while. He is shy, but once you get to know him, he is an absolute joy to know.”
Weston is a part of Team Impact, which pairs children who are facing serious illnesses or disability with college sports teams. Saint Joseph’s College of Maine, located in Standish, participates in the program for their men’s baseball, soccer and lacrosse teams and their women’s volleyball, field hockey, and soccer teams.
Weston’s books may be purchased online from Amazon, and he will be signing copies of his book from 1 to 3 p.m. Saturday, April 4 at Play Warriors, the sole child life therapy provider in Maine, located at 840 Roosevelt Trail in Windham.
More details can be found at the Play Warriors website, www.playwarriorsinc.com, or on their Facebook page. <
