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Minnesota boy with rare disease creates his own backyard hockey tournament

OSTEGO, Minn. (WISH) — A 12-year-old boy from Minnesota refuses to let his rare disease stop him from playing the game he loves.

Owen Lipinski is a self-proclaimed hockey fanatic. He is also one of about 200,000 people in the U.S. with Marfan syndrome, a genetic connective tissue disorder that affects the blood vessels, bones, eyes, lungs, and heart.

“My body’s kind of…it’s not as strong as most other people’s,” Lipinski said.

Lipinski was diagnosed with Marfan when he was two years old. When he got a bit older, Lipinski started playing for Minnesota Special Hockey — but he wanted more. He wanted to play hockey with his friends.

“He still is, you know, ‘I don’t understand why I can’t. I just want to be part of a regular team,” Becky Lipinski, Owen’s mother, said.

Lipinski decided a backyard hockey tournament was in order. He started working toward that goal last summer by recruiting players from his neighborhood.

One teammate said, “He walked up to my doorstep and asked me if I wanted to play.”

Lipinski was able to build six hockey teams using kids from his neighborhood.

With the rosters in place, Lipinski came up with the team names, designed the logos, and sold raffle tickets to help pay for the jerseys. He tapped his little brother to play referee and recruited his friends’ parents to announce, keep score, and clear the ice.

“I am the Zamboni,” one neighbor said.

Then, Lipinski decided, it was time for the tournament. With his friends in their jerseys and parents on hand to help, Lipinski strapped on his goalie gear to tend the net in every game.

“He’s the ‘ultimate goalie,’ as he calls himself,” Becky Lipinski said.

Lipinski’s parents, who were once unsure how their son would cope with his diagnosis, cheered him on from the sidelines.

“It’s something he can do with his friends and probably feel a little bit more like he’s part of a team,” Becky Lipinski said.

This year’s tournament was a big success, and Lipinski is already looking to the future.

“Hopefully, next year, it will be even bigger.”