Evan Moss, 8, who was born with a disorder that causes dangerous seizures, wrote a book to raise money to buy a seizure-detecting service dog for himself while also hopefully helping others. Moss' enterprising idea has now raised enough money to enable other children with epilepsy get their own dogs. NBC's Dr. Nancy Snyderman reports.
Lisa and Rob Moss spent years in constant fear of their young son Evan’s seizures. The boy, now 8, was born with a rare genetic condition that leads to benign tumors in the brain, skin and other parts of the body – and dangerous long-lasting seizures.
“After about five minutes you start to worry about brain damage,” Lisa Moss told NBC’s chief medical editor Dr. Nancy Snyderman. “And his [seizures] last over that, so every single seizure he has is … is really scary.”
The seizures from tuberous sclerosis can be stopped with medication. But that means that Lisa, or her husband Rob, needed to catch them when they started to happen. And the Mosses worried they’d miss one and their son would be harmed.
The family heard that there were dogs trained to spot seizures as they were developing and to sound an alarm by barking.
While no one really knows how service dogs hone in on seizures, some suspect it’s got something to do with a special odor people give off before one starts.
“A dog can smell 100,000 times better than we can,” Snyderman said. “Their senses are heightened. I can’t explain to you chemically what a human body sends off that a dog can pick up.”
The Mosses had one big problem: Seizure dogs are expensive, running about $13,000 for a well-trained one.
As Lisa and Rob Moss began to brainstorm about ways that they could raise money, Evan came up with an idea of his own: he could write a book about seizure dogs and why he wanted one.
Though the family didn’t expect the book to make much money they figured every bit would help, and besides, it would be therapeutic for Evan to write down his thoughts.
“I think it was a good way for him to vocalize his interests in getting a dog and his thoughts on what that was going to be like,” Rob Moss told Snyderman. “It was not only funny, but really interesting to see what he thought we’d be getting the dog for.”
Evan’s priorities were a bit different from his parents. He wrote, “The seizure dog will eat pizza with me.” Another big point for Evan: “The seizure dog can go to school with me.”
The family self-published Evan’s book through Amazon's CreateSpace. And to everyone’s surprise, the book was a hit, earning enough to buy a dog named Mindy for Evan, and service dogs for seven other children with epilepsy.
Pretty soon Evan was even doing book signings.
“It was this idea of this child helping himself,” Lisa Moss told Snyderman. “It really was overwhelming to see how many people came to that book signing and the letters and cards and donations that poured in after that, too.”
These days Evan and Mindy are spending lots of time together and getting to know each other better. At the same time, the dog is helping the Mosses to understand Evan’s condition better.
“She’s giving us insight into things we never would’ve known were going on,” Rob Moss said. And she's given them the hope that they won't miss any of Evan's seizures.
“He has seizures in his sleep," Lisa Moss said. "And that’s really scary too. So we’re also hoping that Mindy will help us identify those.”
As for Evan, he’s just happy to have his new friend. “This is Min-dog,” he says as he leans over and gives Mindy a kiss on the head. “She’s a great dog!” he said.
Learn more about Evan's book at CreateSpace.
Learn more about the organization that trained Evan's service dog at 4 Paws For Ability.
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