Boy battles through dozens of seizures a day

When his disorder is at its worst, 3-year-old Sawyer Schledewitz has 100 seizures a day.

"He had his first seizure an hour after his one year check up," said Sawyer's mother, Coralea Schledewitz. Doctors thought the initial seizure was caused by a sudden spike in temperature but Coralea and her husband, Tyson of Potter weren't so sure.

"We always had a big sense of dread that it was something a lot worse," she said.

In December 2012, he had a 10 minute seizure and stopped breathing. Coralea gave him mouth to mouth until the paramedics arrived. After that, Sawyer was flown from Sidney to Denver where he finally got the emergency tests that Coralea had been asking her doctor to perform for weeks. During the tests, his epileptologist found that he was having multiple types of seizures and many of them every day. After the tests, he received a diagnosis of Doose Syndrome.

"It's a rare, catastrophic version of epilepsy," said Heather Jackson, founder of the Doose Syndrome Epilepsy Alliance.

Doose Syndrome has no known cause or cure.

The family is waiting for results on tests of 32 genetic markers which will give them a more definite answer about his diagnosis. Although his doctor suspects Sawyer has Doose Syndrom, he could also have Dravet Syndrome, which causes loss of limb function or Batten disease, which is terminal.

"We're just praying that it's a Doose diagnosis and doesn't turn into anything else," Coralea said.

Sawyer's family has tried a wide range of treatments to try to relieve him of seizures. In December of last year, they started Sawyer on a ketogenic diet which starves the brain of sugar alcohols. It stopped his seizures for two weeks.

"Within the second day he sat up in his bed and he smiled and he said, 'Hi,'" Coralea said. "It was the first time he'd talked or smiled in as long as we can remember. So we had a miraculous Christmas this year."

The ketogenic diet is so restrictive that Sawyer wasn't getting enough nutrients and his parents had to take him off of it. The seizures came back.

Right now Sawyer is on a seizure medicine considered his last chance before brain surgery. After the first dose the seizures stopped, but he has to have weekly blood monitoring because the medicine can inhibit bone marrow function. His last two tests came back with a low white blood cell count, so the dosage had to be dropped. If the next blood tests come back with low white blood cell count, they'll probably have to take him off of it and go on with brain surgery.

The surgery is called a corpus collosotomy. The most common side effect is temporary loss of leg function but it can also result in blindness or death.

"It's a chance we have to take because otherwise there's just no chance at life for him," Coralea said.

Coralea met Jackson through Facebook and says Jackson's organization has been a big source of support. Jackson, whose 10-year-old son has Doose, created DSEA two years ago.

"We're the only nonprofit in the world that benefits these families," she said. The organization raised $80,000 in its first year. Most of DSEA's donations go toward research but it also gives grants to families for things such as service dogs and medical bills.

The DSEA's national Doose Syndrome walk is June 8 at 9 a.m. in Colorado Springs. But since Sawyer has a hard time traveling, Coralea has organized an associated walk in Sidney. Strides for Sawyer started at 9 a.m. on June 8 in Legion park. Coralea expects around 40 participants but encourages everyone to donate. All donations will go to the DSEA.

For Coralea, who had to quit her job as a Cabela's travel agent to take care of her son, daily life can be a challenge.

When Sawyer is having seizures, he can't talk, he barely eats and he can't smile or walk.

"He's like an infant, you have to hold him like an infant," she said.

Sawyer has a high risk of sudden unexplained death in epilepsy, which means he could have a heart attack or stop breathing or choke on vomit during the night.

"There's a lot of anxiety that comes with it," Coralea said. "He sleeps with us now." They monitor him with video during his naps.

But there are moments of respite, when the medicines and treatments are working. When he's doing well, Sawyer like to hunt for rocks, play video games, do puzzles and watch "Yo Gabba Gabba." He just qualified for Make A Wish and he wished to be on an episode of "Yo Gabba Gabba."

"When he is ok, you're still on the edge of your seat, just waiting for it to start," Coralea said. "I call it cautiously happy."

Sawyer's family just started him in day care for an hour two days a week. It's the first time he's had interaction with other children.

"He's a very social little boy, so he loves to be with people," she said. "He loves to play with kids."

The community of Potter just had a benefit for Sawyer. Coralea said the support from people in the area was overwhelming.

"I know everybody now," she said.

Even though things are tough at the moment, with the support of DSEA and help from the local community, Coralea still has hope for the future.

She wants Sawyer to be able to have a job and a girlfriend and do whatever he wants to do.

"My hope is that we can stop the seizures so he can have a normal, functional life," she said.