Community rallies for 11-year-old with spina bifida

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Owen Smyser, an 11-year-old with spina bifida, poses for a photo with his family. He raised $11,000 during the 4th Annual 5K Walk-N-Roll for Spina Bifida at Steele Indian School Park in October. “Team Owen” was honored for having raised the most money for Spina Bifida Association of Arizona.

Owen Smyser is only halfway to 12, but he’s already a whiz at public speaking and fundraising.

The sixth-grade student from Quail Run Elementary School raised $11,000 during the 4th Annual 5K Walk-N-Roll for Spina Bifida at Steele Indian School Park last month.

Owen was only the 116th baby to undergo fetal surgery at Vanderbilt University Medical Center at 25-weeks gestation to close the hole in his back.

Team Owen was honored as having raised the most money for Spina Bifida Association of Arizona, SBA-AZ, which helps to improve the quality of life for those living with this complex birth defect.

All monies raised go into a general fund that provides a wide array of services such as housing, Christmas parties, hand-crank bikes, service dogs and medical supplies.

Owen had more than 55 team members support his efforts, from out-of-state and school friends to his parish, St. Joseph.

“We really hyped it up this year and went to town,” said Charla, his mother.

Owen was featured on his school announcements where he talked about the birth defect, and how to interact with someone who has a disability.

“Don’t be afraid to say hi to me or talk to people with spina bifida,” he said. “We’re just like everybody else.”

At church, Owen attended every religious education class to introduce himself and talk about his fund-raising goals for the association while the Lady Knights sold breakfast burritos after Mass to raise money for Team Owen.

The parish also sponsored raffles and car washes to help Owen meet and exceed his fundraising goal of $10,000.

Owen, who has a manual wheelchair for mobility, enjoys swimming, amusement parks and bike rides with his father, Phillip, and sister, Lilly.

“My hero is my mom because if it wasn’t for her, I may have never been here,” Owen said.

Charla said spina bifida is more common than most people think, but because fetuses with the condition are often aborted, it’s not as well known.

“You can see the hole in the back at 18 weeks,” she said, “and 50 percent of children are aborted. It’s very sad. When we were told, they said I could carry to term and have a severely disabled child or terminate. Owen is beautiful and does so many things.”

Owen’s father, Phillip, told the Valley hospital that abortion was not an option for the couple.

“Even in the 20th week, that is a viable child and parents are taking action to give their children life,” Charla said. “Fetal surgery gave Owen tremendous opportunities.”

The family is hoping, with the assistance of SBA-AZ, to receive a service dog through Scottsdale-based Power Paws.

Power Paws trains and provides skilled assistance dogs to adults and children with disabilities throughout the United States.

The four-legged companion will not only open up his social life by making it easier for Owen to participate with his peer group, but will be a great help.

A service dog can open and close doors, retrieve out-of-reach items and help Owen during school fire drills or lockdowns.

“A dog might bring more attention to me,” Owen said.

One thing is certain: Owen doesn’t let anything slow him down.

“He’s a little boy running around, not a spina bifida running around,” Charla said. “He’s my life.”

Spina bifida

For more information about spina bifida, visit:

www.sbaaz.org

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