10-year-old St. Paul hockey player with rare condition impresses Devan Dubnyk
Owen, 10, is battling a rare condition that has never dampened his spirit.
ST. PAUL, Minn. (FOX 9) - It was a bleak diagnosis for a 10-year-old St. Paul boy when he was first born as doctors told his family he most likely wouldn’t survive.
Despite many setbacks in his young life, Owen Nei isn’t letting a life-changing medical condition stop him, whether he’s on the baseball diamond or on the ice.
Nei, a hockey player for the St. Paul Capitals C Squirt Team, is inspiring everyone around him to live life to the fullest.
“It just means so much to me,” Owen said. “It means my whole life.”
At just age 10, Owen has already had 15 surgeries since he was born to treat a medical condition he was diagnosed with while in utero called Hyrdocephulas, a rare illness where fluid builds up in the ventricles deep within the brain.
There was so much fluid it looked like he had no brain tissue. His mother, Kim Nei, says three different doctors told her to terminate the pregnancy because he would be so severely handicapped. That, she said, was not an option for her and her husband.
“She kept saying that his thumb, how we’d know was that his thumb would grow out this way, and one day during the 3D ultrasound, he waved at the camera and it was obvious that his thumb was not that way and I looked at her and I said it looks like you were wrong,” Kim Nei said.
Miraculously, Owen was born nearly full-term, but faced even more challenges.
He was also diagnosed with Goldenhar syndrome, a rare congenital condition characterized by incomplete development of the ear, nose, lip and jaw.
Owen endured multiple surgeries to keep him alive.
“He’s a gift to our family and to everybody that meets him,” Kim Nei added.
Despite the bleak diagnosis, Owen has never let his medical condition stop him.
He keeps up with his peers in the fifth grade and plays multiple sports. Hockey, just like his siblings, is favorite.
“With his condition, we weren’t sure if he would be able to and his neurosurgeon said it was just find until they start checking,” Nei said.
Of course, checking is all Owen wants to do out on the ice, too.
“It’s so fun, you can shoot the puck really hard and check people,” Owen said.
Because of his infectious smile and positive attitude, Owen is a huge inspiration to his teammates and anyone he meets, including Minnesota Wild Goalie Devan Dubnyk.
The two recently teamed up for a program called Hockey Kids for Kids, where youth hockey teams raise money for Gillette Children’s Hospital, the space that treated and cared for Owen.
“When you have an attitude like he does and he doesn’t see any limitations, he just goes out and that’s what he wants to do and you can see how powerful the mind is when you go and it can teach us all something,” said Dubnyk.
According to his parents, Owen’s prognosis is good. He still has a shunt in his head and may require surgery in the future, but is regularly monitored by his medical team.