A Leesburg family’s suburban home and their oldest son’s rare form of epilepsy have become the setting and topic of a comic book.
Jackson Schnur has a form of epilepsy called Lennox-Gastaut Syndrome that causes him to suffer seizures, mostly in his sleep. It also puts him behind developmentally—he spends a lot of time in a wheelchair, and although he’s 7 years old, his cognition is about on the level of a 12 month old and he communicates physically and with wordless sounds. The family keeps a constant eye on him, because he has a tremendous pain tolerance and can hurt himself without realizing. Tenley, his 5-and-a-half-year-old sister, acts as a loving older sibling to him.
The brother-sister duo are the stars of the latest edition of Medikidz, the fifth in the “Medikidz Explain Epilepsy” series.
“Anywhere we are, I always keep one copy on me,” said Jeannie Schnur, Jackson and Tenley’s mother. “So when we got to Jackson’s doctor’s appointments we show those people, or our friends as we run into them.”
The 16-page comic book starts with the Schnur family watching TV together when Jackson dozes off and suffers a seizure, a common sight at their home.
“I really like the depiction of the types of seizures, because when we tell people that Jackson has seizures, most of the time they think of the grand mal seizures,” Jeannie said. “Jackson’s are short, but they’re repetitive, and they’re just as dangerous.”
In the book, as the parents take Jackson to bed, the Medikidz—superheroes and experts in health and fitness who live on Mediland, a planet shaped like the human body—appear and explain Lennox-Gastaut Syndrome to Tenley.
“I think she really likes it,” said Carl, Tenley and Jackson’s father. “I think she likes seeing herself in there, and we really like near the end of the book where she’s playing with Jackson on the couch together. They actually do that. She’s able to comfort and entertain him as well.”
Tenley has confirmed that she likes the comic book. A copy on the family’s kitchen table is already getting dog-eared from use.
Jeannie and Carl Schnur often struggle to explain LGS, a rare and complicated problem, while taking care of three children. Now, they can hand out copies of the Medikidz comic.
Unlike a medical textbook, the comic book is brightly colored and easy to understand. But like a medical textbook, it is peer-reviewed. Dr. James Wheless, clinical director of the Le Bonheur Neuroscience Center and Chief of the Department of Pediatric Neurology at St. Jude’s Children’s Research Hospital in Memphis, TN, is one of the few doctors in the country who treats LGS. Last year, his epilepsy program saw children from 40 states, including Virginia, and he was one of four doctors to apply their expertise to the book.
“As a physician, I have to admit, this is kind of cool,” Wheless said. “While I’ve actually published a couple of textbooks… and written several hundred medical articles, it’s not every day I get to be involved in a comic book.”
Wheless said the information and terminology in the book is “right on target” and fills a need for age-appropriate educational materials to help children grasp complicated medical concepts.
“It really advances a goal that I think is critically important, which is educating children about epilepsy to try and minimize the stigma,” Wheless said. “If we don’t start with children, we’re never going to get past the stigma.”
His office has copies of Medikidz comic books in the waiting room, and he hands them out to families with similar struggles.
And like a medical textbook, the comic book might even help doctors-to-be.
“I have a daughter that just started med school this fall, and she’s seen several of these,” Wheless said. “She’s actually been impressed by how accurate they are, and how easy to understand.”
Tim Clark, senior director of government affairs, policy and corporate advocacy at Japanese pharmaceutical company Eisai, said the books “really do tell a story in a really nice way that can educate these young men and women.”
“We hear stories when we’re in a place where we have the books,” Clark said. “People generally come up to us and tell us how helpful they’ve been.”
Clark said Eisai helped pay for the development of the comic. It is the company’s fifth collaboration with Medikidz.
The family went to a launch party in Baltimore on Saturday.
“We’re very humbled and honored to be a part of it, share a little bit about our daily life, and contribute to a resource that would be available to families on an initial diagnosis that they could quickly share with family and friends,” Carl said. “We really struggled with that, having to explain it.”
Get a free copy of “Medikidz Explain Lennox-Gastaut Syndrome” by signing up to join LGS Family at LivingWithLGS.com.