Ethan Swartz hasn’t let a rare brain condition slow him down

 

When Heidi Swartz gave birth to her son, Ethan, in 2006, her doctors warned he’d most likely never walk or talk – and possibly never even take more than one breath.

He’d been born with a rare brain condition, rhombencephalosynapsis, or RES, in which parts of the cerebellum and other areas of the brain are missing. He also has holes in his heart and a single kidney, the other having mysteriously disappeared at some point during his first year of life.

“He had two in utero,” Heidi said.

Ethan’s missing kidney isn’t the only medical mystery to perplex his doctors. The now 15-year-old Eagle Scout has defied their grim predictions at every turn.

“He’s our miracle,” Heidi said.

It hasn’t been easy. Much of Ethan’s life has revolved around doctor’s appointments and physical and occupational therapy sessions. He’s had brain surgery and spine surgery, and has been in special education since he started school at age 3.

“With RES children, nothing comes natural to them,” Heidi said. “Everything they do to live has to be taught.”

While Ethan appears outwardly normal, his condition has caused him to develop a series of quirks, including involuntary head twirling and the lack of any filter when it comes to expressing his desires and opinions.

“It can get him in trouble,” Heidi said.

Ethan recalls once getting sent to the school principal’s office after he began shaking his head during a lecture on former President Abraham Lincoln and his accomplishments.

The teacher “was talking about how Abraham Lincoln was a good man” and “he thought I was saying ‘no,’” Ethan said. “I’ve had teachers tell me, ‘Why are you shaking your head?’ ”

He’s also had to contend with bullying from fellow students.

Ethan has an individualized education program, or IEP, which allows him to frequently miss school to attend his doctor’s appointments. But when the Swartz family moved from Chesapeake to Isle of Wight County in 2017, Heidi found herself starting over with familiarizing the school system with his quirks.

“He looks so normal and average, so he’s expected to act like an average child, and that’s sometimes one of the hardest things to overcome,” Heidi said.

Ethan credits his older brother, Travis, for his interest in scouting and wrestling. Travis, now freshly graduated from Navy bootcamp, was in Cub Scouts when Ethan was born and earned his own Eagle rank a few years earlier.

Though playing any kind of sport himself was out of the question, Smithfield High School’s wrestling coach recently afforded Ethan the opportunity to join the team as its videographer.

“He got to travel with them at Christmastime and go to a conference with them in North Carolina,” Heidi said.

Sports aside, Ethan hasn’t let his condition slow him down.

In 2020, he, his father, Chris, and two of his fellow scouts from Smithfield’s Troop 7 backpacked over 30 miles in five days on switchback trails in the Smoky Mountains at elevations of 5,000 feet, earning the boys their hiking merit badges. The final leg of the journey included a 20-mile hike in a single day.

For his Eagle Scout community service project, Ethan offered to build two cages for the Isle of Wight County Animal Shelter to house chickens, pigs and other livestock when needed.

Smithfield’s Tractor Supply store donated the chicken wire for the cages. Swartz ended up crowdsourcing lumber and remaining materials online, which netted a number of donations from family friends and even members of the community who didn’t know the Swartzes personally.

Ethan worked closely with Maj. Joseph Willard of the Isle of Wight County Sheriff’s Office, Deputy Amanda Griffin and Animal Control Chief Roy Richards on the project, but when the shelter went ahead and cleared out its old livestock setup, it left Ethan with only a week to assemble everything.

“I wasn’t on my time anymore,” said Ethan, who worked after school during final exams to finish the project. “If they were to get hogs or chickens, they would have nowhere to put them.”

Sure enough, the shelter picked up two pigs just a week after Ethan finished everything.

Ethan earned his Eagle rank on June 20, seven weeks shy of his 16th birthday.

Ethan plans to enroll in Isle of Wight County Schools nursing career and technical education program with hopes of one day working at the Children’s Hospital of the King’s Daughters to “help other kids like me,” he said.