Then, thanks to a remarkable outpouring of public support, he raised $45,000, enough to buy service dogs for himself and seven other people. Last month, Evan and his family traveled to Xenia, Ohio, to learn how to handle Mindy.
Mindy, their finely trained new dog, can detect seizures in advance and notify Evan and his family. She uses “machine-gun licking," as Evan calls it, to alert him that a seizure is imminent.
Now the Mosses are back in the Alexandria section of Fairfax County, Va., with Mindy (and a second dog, Dinky, rescued earlier by Evan’s sister Aria). And the amazing journey of Evan, who has gone through more severe seizure episodes and emergency room visits than you can imagine, now enters a new phase. He is 8.
Evan was born with tuberous sclerosis complex, which caused him to have 300 to 400 short seizures a month as a small child. Brain surgery at 4 stopped the short seizures, but he began to have longer and more serious seizures.
His parents immersed themselves not only in the literature of epilepsy, but also the culture. Rob Moss created a remarkable free website called Seizure Tracker, which helps parents monitor and share data. He has since added a mobile app. Lisa Moss joined the board of the Epilepsy Foundation and is working full time for the Tuberous Sclerosis Alliance.
Rob and Lisa also learned about “seizure dogs," specially trained not only to alert the epileptic, particularly if he or she is sleeping, but to alert the parents if the person needs help.
The dogs can pick up a scent that provides warning that a seizure is coming as much as five hours before a grand mal seizure (20 minutes before a small seizure). They also can help navigate crowds and provide soothing support by placing their head in one’s lap.
Evan had the idea to write the book last year. He drew pictures of his imagined “seizure dog" sleeping with him and going on airplanes with him and dictated the text to his mother. She self-published the book, got it on Amazon.com and arranged for a book signing in July 2011 at Grounded Coffee, a nearby family hangout.
Shortly before the book signing, a story about Evan appeared in The Washington Post. And Post readers responded. The book signing was mobbed, with more than 600 people lined up to buy books. Folks came from as far away as Pennsylvania and New Jersey, some with service dogs of their own.
More than 400 copies of the book quickly sold for $10 apiece. Post readers sent numerous emails offering to help, the book shot to No. 1 on Amazon’s best-seller list of children’s health books and, within a week, Evan had raised $20,000.
People magazine flew Evan and his family to Ohio, to 4 Paws for Ability, which trains and raises the service dogs, and vets the families who receive one. The dogs cost $22,000 to train, and 4 Paws asks recipients to pay $13,000. Families launch fundraising drives that can last years, tracked by 4 Paws.
Last month, the Mosses returned to 4 Paws to pick up Mindy. After two days, they were instructed to take the dog back to their hotel, and by the fifth day, they were trying to deal with the distractions and bustle of a large shopping mall. Graduation was on Day 10.
There were eight other families being trained at the same time, Lisa Moss said, with recipients ranging in age from 5 to 21. Evan remembered them all and narrated his photo show of their dogs on his camera.
Mindy is a golden poodle, part golden retriever and part standard poodle. When Evan met her, she had pink bows in her hair. This was something of an outrage.
“I can’t believe she has bows in her hair," Evan recalled of their first moment together. “I’m a boy!"
But she’s a girl, I said.
“Still. She’s my dog."
His father handled the bulk of the training, with the focus for Evan more on bonding than the mechanics of obedience.
Mindy is just 11 months old and was trained for about five months before meeting Evan. She is friendly and calm, but when her service vest is snapped on, she becomes more upright and serious. She’s ready.