There is much about 7-year-old Evan Moss that is not exceptional. He is in constant motion. He can speak endlessly about Pokemon. He thinks the cartoon “Phineas and Ferb” is, “like, hilarious.”
But Evan Moss also has epilepsy and suffers from severe, possibly life-threatening seizures. And when he found out that there was a type of specially trained dog that can detect seizures and act to help him, Evan had the idea to write a book to help raise the $13,000 needed to buy such a dog.
And that is exceptional.
In addition, the experience spurred his parents Rob and Lisa Moss, to create the Seizure Tracker Web site, a free and innovative way for people with epilepsy (and other disease sufferers) to record and share their experiences with seizures, medication and other events. The site now has 8,000 registered users worldwide.
Evan lives with his parents and 9-year-old sister Aria in the Virginia Hills neighborhood, just off Telegraph Road in the Alexandria section of Fairfax County. He is a second-grader at Rose Hill Elementary School, and he has been dealing with epileptic seizures since he was an infant. The seizures are now so severe, his mother said, that “Really, this dog is going to be a life-saver.”
At one point, Evan was having 300 to 400 short seizures a month because of tuberous sclerosis complex, his parents said. Brain surgery at age 4 stopped those seizures. Then, much longer and more serious seizures began about two years ago, the kind that require heavy medication and sometimes emergency medical response.
But Evan seems completely undaunted. He had a seizure Friday morning, just hours before meeting with a reporter. He showed no signs of it, even though his mother said he had taken medication that would have knocked most people out.
The Mosses educated themselves about epilepsy, and Lisa Moss now is on the board of directors of the Epilepsy Foundation. Rob Moss spends most of his time improving the Web site the family created. “There was nothing out there” before Seizure Tracker, he said.
Family friend Bob Kohm said, “He locked himself in a basement for a year, and he spends his time constantly making it better.” The site was launched as Evan was undergoing brain surgery and the next day there were 250 users.
In the course of learning about epilepsy, the Mosses discovered seizure dogs, specially trained to alert epilepsy sufferers in case they are sleeping, and to alert the parents if the person needs help. The dogs are trained by 4 Paws for Ability, and cost about $22,000. The organization asks participants to pay $13,000.
And so the literary work “My Seizure Dog,” influenced by such writers as Leo Leonni (“Inch by Inch”) and Mary Pope Osborne (“Magic Tree House” series) was born. It is self-published through CreateSpace.com, and can be purchased there or through Amazon.com.
“It’s kind of like,” Evan explained, “I had the idea when Mom and Dad told me I was getting a seizure dog and had to pay $13,000. So we decided to sell it to make money, and we’re having a signing at Grounded Coffee,” on Telegraph Road.
Well, that sort of says it all.
In the book, Evan says, he shows that “the dog will eat pizza with me. If I go to the moon, it will go there with me.” Those are his favorite parts.
“Now that I wrote such a good book,” he added, “I think I’m going to be a famous author. That’s actually my dream.” He said a first-grade class called Writer’s Workshop helped inspire him. In addition to writing, he also wants to be an astronaut and work in a pet supply store.
Epileptic children face the possibility of such things as sudden unexplained death due to epilepsy (SUDEP) or death by suffocation when they have a seizure in their sleep and can’t roll over. Seizure dogs can provide critical help in those moments.
Despite the surgery, the medications and the grand mal seizures, “He’s pretty upbeat,” his mother said, and he is not autistic, as many epileptic children are.
“He’s an amazing kid,” said Kohm, whose sons Marcus and Josh are Evan’s best friends. “Evan will just say, ‘I’m going to have a seizure,’ Then when it’s over, go back to doing what he’s doing. It’s just part of the Evan experience. It doesn’t define him.”
Evan’s book-signing is at Grounded Coffee, 6919 Telegraph Road in the Alexandria area, from 1 to 3 p.m. Sunday. If you would like to make a donation to help him, send a check payable to “4 Paws for Ability” to:
4 Paws for Ability
Fund for Evan Moss
253 Dayton Ave.
Xenia, Ohio 45385