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Spina Bifida not stopping people from living their best life

Posted at 11:36 AM, Oct 14, 2020
and last updated 2020-10-14 12:40:53-04

OMAHA, Neb. (KMTV) — October is National Spina Bifida Awareness Month.

Spina bifida is when a developing baby's spinal cord fails to develop or close properly when in the womb. The Nebraska Spina Bifida Chapter has people from a variety of ages and physical ability levels.

"Just because we have Spina bifida, that does not mean that it defines us, and we can do anything we set our minds to," said Nia Karmann, President, Nebraska Spina Bifida.

"I want to normalize Spina bifida and let people know that we are not much different from everybody else," says Owen Smyser, Member, Nebraska Spina Bifida.

The Nebraska chapter has around 60 active families. They say family and community support is what keeps them going strong.

"When they told us Owen had Spina Bifida, the technician cried, and they encouraged abortion because it was so severe. Life has challenges and it's hard when you can't stand up and your body doesn't want to work. But you don't have to have a perfect body, you don't have to have a perfect anything. You have life and that's beautiful," said Charla Smyser, Owen's Mom.

Having this challenge hasn't stopped Nia or Owen from living their life to the fullest.

"I'm kind of an adrenaline junkie. I like to travel and try new things, I have gone skydiving, I've driven a jet ski and I've adapted snow ski and water ski," continues Karmann.

Smyser adds, "I've done cycling with a wheelchair racing team and that was super fun."

The group has monthly events and fundraisers. The money collected is used for medical expenses, equipment like wheelchairs, crutches, foot braces as well as to make cars and homes more accessible.

"I don't think people should be scared or afraid to approach us or communicate with us," continues Owen.

The group has a couple of upcoming events where you can connect with them and support their mission.

They are:

Saturday, October 17th
Grant Street Bar
8919 Grant street
Hours: 2:00 p.m. - 6:00 p.m.

Sunday, October 25th (National Spina Bifida Day)
Caring & Sharing Night
Don & Millies (all 8 locations)
Omaha, Bellevue & Lincoln
Hours: All day

For more information, visit

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