Duluth boy's book helps himself and others
DULUTH, Minn. - Evan Moss is a 9-year-old boy who loves to swim and ride his bike and knows everything imaginable about Pokemon. He's also an author, and he's the inspiration for a website used by 14,000 people worldwide to monitor their children...
DULUTH, Minn. - Evan Moss is a 9-year-old boy who loves to swim and ride his bike and knows everything imaginable about Pokemon.
He's also an author, and he's the inspiration for a website used by 14,000 people worldwide to monitor their children's seizures.
His mom, Lisa Moss, was born in Duluth and grew up in the town of Finland, Minn. Lisa Moss will be the keynote speaker at the Midwest Seizure Smart Summer Conference on Thursday at the Radisson Duluth Harborview. About 200 people are expected for the statewide event sponsored by the Epilepsy Foundation of Minnesota, said Mary Giese, the nonprofit's community outreach coordinator for the Northland region.
The story Lisa Moss will tell is one of a family rising to take on the heartbreaking challenges posed by a cruel genetic condition.
The Mosses - Rob, Lisa, daughter Aria, 11, and Evan - live in Lorton, Va., outside Washington, D.C. The newest member of the family is a highly trained, highly adorable goldendoodle named Mindy, but that part of the story comes later.
Evan was a baby when he started having seizures. He originally was diagnosed with epilepsy, but an MRI revealed three masses on his brain, and a second MRI revealed a fourth. The Mosses learned that he has tuberous sclerosis complex, a genetic condition that causes tumors to grow on the body's organs and is the leading genetic cause of both epilepsy and autism.
Little Evan was having between 300 and 400 seizures per month.
"Basically, in the morning we would all wake up and we would wait for him to have his first seizure, and then we would wait to see how long it was before he had his second seizure," Lisa Moss said. "And that would be his pacing for the day. If they were five minutes apart, they would be five minutes apart all day long or until he took a nap or went to sleep at night."
The Mosses were told to track Evan's seizures, and they were handed a sheet with 365 boxes on it - one for each day of the year. It was totally inadequate for the frequency of Evan's seizures.
"We started looking for a way to do it online because we knew that that would be easier," Lisa Moss said. "And there just wasn't anything available."
So, Rob Moss, although not a Web designer by trade, decided to build a program himself. "He's self-taught and tenacious and put his mind to it and went out and did it," she said.
The program allowed Rob and Lisa to log Evan's seizures and medications and create a graph so they could see what was working and what wasn't. "It just gave us a lot of different ways to look at the information," Lisa Moss said.
When their doctor saw it, he asked if other families could use the program. They couldn't, because it was tailored specifically for Evan. Rob Moss went back to work, expanding the program to incorporate various types of seizures, medications and therapies.
What emerged was seizuretracker.com, a free online service now being used by more than 14,000 people worldwide. It has the ability to track diet as well as seizure medications, and to send a report to a physician with the click of the button. Recently an iPhone app was added, allowing caregivers to videotape and time a seizure and upload the information to the website.
The program was helping the Mosses understand their son's seizures, but it wasn't making them go away. Frequent medication changes were having no effect. Finally, they made the difficult decision to approve brain surgery. Within two weeks, 4-year-old Evan underwent three operations.
Christmas Eve 2009
The result was breathtaking: Evan was seizure-free.
But a two-year reprieve from seizures ended on Christmas Eve 2009.
It was different from the other seizures, Lisa Moss said. The previous ones had been short and subtle. Evan wouldn't lose consciousness, and he would be able to talk about what he was feeling. He wouldn't be frightened by memories of his seizures.
The Christmas Eve seizure happened in his sleep and was "really scary," she said.
"That's what his seizures look like now," she said. "They happen in his sleep. They start off convulsive and then they settle into something a little more rhythmic. But they last upwards of 10 minutes. We always have to give an emergency medication to stop the seizure. And sometimes we give two doses, and on those occasions we also call 911."
Instead of hundreds of seizures a month, Evan now has one about every 10 days. They're irregular, and they usually occur when he is sleeping. He sleeps in his mom and dad's bed, but they were still afraid that they'd miss a seizure.
"We just felt like we needed an extra set of eyes, and I guess you could say a highly trained nose as well," she said.
'My Seizure Dog'
So, they applied for a service dog through 4 Paws for Ability, a nonprofit that specifically trains the dogs to work with children. Part of the application process required Evan, then a first-grader, to draw a picture or write a letter about why he wanted a service dog.
"We asked Evan about that, and his response was: 'I don't want to do that,'" Lisa Moss related. "And we were kind of like: 'Oh, no, did we misjudge this? Maybe he doesn't even want a dog.' But he said, 'Can I write a book instead?' "
Evan wrote down his thoughts and added drawings. The Mosses used a Word program and a stapler to create the book, sent it in with his application and forgot about it.
Except that they needed to raise $13,000 to pay for about half the cost of training the dog. As they discussed fundraising ideas with friends, big sister Aria said: Why don't we sell Evan's book?
Investigating that idea, they found a self-publishing company. Rob Moss scanned in Evan's drawings, Lisa Moss typed his words, and they made 200 copies of "My Seizure Dog," by Evan Moss.
They arranged a book signing nearby at a place called the Grounded Coffee Shop. The idea of a 7-year-old signing his own books as a fundraiser to help himself caught the media's attention, and a local TV station, The Washington Post and Huffington Post wrote stories about it.
"From there, it just went crazy, and we had over 600 people show up for the book signing at this little coffee shop," Lisa Moss said. "There was a line stretching down the road and around the corner."
They quickly ran out of books, but the donations kept coming, and by the end of the day Evan had his $13,000. A week later, someone who had misread the date of the book signing came to the coffee shop with a single $13,000 check. In addition to that single, big check, Evan has raised about $50,000 to date. 4 Paws for Ability has used that money to finish the fundraising for children who had been waiting the longest for a service dog, Lisa Moss said.
Christine Bernard, of Willow River, Minn., said her son Noah, 7, is one of those children.
"We had raised $5,000 and stalled out and struggled for almost two years before his money came in to finish it off," Bernard said this past week.
Noah had his first seizure just before he was 2, Bernard said, and doctors had to put him in a coma to make it stop. Noah, who has been diagnosed with epilepsy and autism, continued to have similar seizures. There would be a trip to the emergency room every month, she said.
"The seizures come in the middle of the night, so no one was sleeping," she said.
In September 2011, a letter came in the mail saying an anonymous contribution had come in and Noah's funding was complete.
It was another year before Noah's dog was ready for him. Last September, during a two-week training session with the dog, a crew was at the camp filming a video about Evan's story. "It just fell into place," Bernard said. "He was our anonymous donor."
The dog, a golden lab named Twizzler, has been on the job since September and hasn't missed a seizure, Bernard said. She "alerts" to larger seizures 12 to 24 hours ahead of when they occur, and catches the smaller seizures as well. The dog gives an unmistakable signal.
"She gets intent on his ears, smelling them and licking them," said Bernard, who will meet Lisa Moss at Thursday's conference. "At any cost, she wants to get to his ears."
Evan and Mindy
Evan's dog, Mindy, exhibits similar behavior, licking Evan around the ears and mouth and barking when she detects a seizure, Lisa Moss said.
The Mosses have had Mindy for a year, and she, too, has had a perfect record of spotting seizures.
"It has been really interesting to see her at work," she said.
Except when Evan is biking or swimming, Mindy is always with him, she said.
But the difficult journey continues for the Moss family. Once again, medications don't seem likely to stop Evan's seizures. Rob and Lisa are in the early stages of again considering brain surgery.
In the meantime, they know that their Web program and Evan's book have helped other families facing similar challenges. That's also the purpose of Lisa Moss' talk in Duluth.
"People have questions about all different kinds of things," she said. "It's nice to be able to provide that support to the community. It's one of the most rewarding things that I get to do."