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Tom Mix, Published September 05 2012

West Fargo swimmer overcomes vision, hearing issues

West Fargo - Dream it, wish it, do it.

That catchy team motto is found written in Chinese characters on the T-shirts worn by members of the West Fargo girls swimming and diving team. But for eighth-grade swimmer Eden Neva, those words are her mission statement.

Neva, 13, swims on the Packers varsity despite having a rare set of characteristic disorders known as CHARGE syndrome, which is extremely complex and involves a large spectrum of birth defects that occur in roughly one in every 10,000 births worldwide.

Those with CHARGE can suffer from any number of life-threatening birth defects, including heart ailments, breathing issues, deafness and blindness.

Neva is both partially deaf and blind. CHARGE has impacted her development and growth, but it hasn’t confined her to the pool deck.

“I feel like I get a chance that other people don’t get to have,” said Neva, who attends Cheney Middle School. “I am amazed that I can continue to get better with the help of the coaches.”

It has been a difficult journey thus far for Neva, who had her first MRI at 17 days old. The most extreme disorders included in the CHARGE syndrome spectrum that Neva suffers from are hearing and sight loss. She had a heart murmur as a baby, but has since had no issues.

Neva is legally blind, but can see faces that are six feet away and can read words 6-12 inches away with her left eye. She has moderate hearing in her right ear and wears a hearing aid. She has several deformities in her inner ear that will likely take away all of her hearing.

Her balance and ability to move have been impacted because she was born with no semi-circular canals in her ears.

Through it all, Neva defies the odds, which at birth had her not being able to walk.

“Mentally she is very intelligent,” Eden’s mother Jody Neva said. “When people see her swimming, they assume she is retarded, and that would be OK, but she is not. It is so complex, and she is doing so many things that shouldn’t be able to do.

“She takes everything on. She is not afraid of anything. She is not a quitter and will tell you she is not a quitter. … She is always thinking ahead and setting goals for herself.”

Eden Neva started swimming in third grade, following in the footsteps of older sister Madison – a sophomore and fellow swimmer for the Packers – and brother Ryder, who swam and dove for the Packers before graduating last spring.

After lessons she joined West Fargo’s youth swimming club, where Jody Neva thought her daughter’s athletic ambitions would be limited to. But last fall Eden bucked the odds again, joining the Packers varsity roster.

“We weren’t going to put her on the team, because I didn’t feel like she was emotionally, physically or mentality prepared for it,” Jody Neva said. “Marsha (Dahl) called and got word of that and said, ‘We want her.’”

Eden Neva, who also competes in track and field, swims in a variety of events, which continues to impress West Fargo head coach Marsha Dahl.

“When she gets to pick her own events, she always picks the hardest ones,” Dahl said. “She doesn’t slack and pick the 50 and 100-yard freestyle. She wants to try them all.”

Neva’s ultimate goal is to qualify for an event at the state meet. She enjoys the perks of competing in a varsity sport.

“I enjoy swimming with my friends,” Eden Neva said. “I hope I’m an inspiration to others, but I’ll be fine if I’m not.”

Her teammates and coaches were not as humble in discussing what Neva brings to the Packers with her tenacious, never-give-in approach.

“She is a huge inspiration to all of us,” West Fargo junior swimmer Hannah Reis said. “She shows us how blessed we are. She works so hard and wants to make state this year, and that is so cool to see that she thinks that hard about it and is so dedicated.”

Last season, Neva’s dedication was on full display. Her three goals in her first year of varsity swimming were to swim the 200 freestyle, the 100 butterfly and swim the 50 freestyle in under a minute.

Neva hit her time in the 50 freestyle, which was met with loud cheers from her coaches, teammates and spectators.

“Everybody loves watching Eden,” Dahl said. “She gives everybody a spark. You often see a lot of people cheer for her at the end of her races. She comes into practice every day with a smile. The girls really appreciate having her on the team.”


Readers can reach Forum reporter Tom Mix at (701) 241-5562