Jefferson Award winner volunteers despite living with rare genet - WXOW News 19 La Crosse, WI – News, Weather and Sports |

Jefferson Award winner volunteers despite living with rare genetic disorder

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La Crosse, WI (WXOW) -

Stephanie Stevens says the help her family received from Shriner's Hospital when she was born with a rare genetic disease set the course of her life.

"They were never asked to pay back anything but we were told we could pay it forward. So we go into these hospitals dressed as super heroes and it allows those children just a little time without thinking about how ill they are," said Stephanie.

Stephanie is co-owner of Brilliant Bodyworks in Onalaska and while on the outside, she looks like she's got it all together, things can fall apart quickly.  Stephanie lives with Ehler's Danlos Disease, a rare genetic disease in which a person has hyper flexible joints that can hyper extend or break at any moment.

"It makes you push yourself forward a little bit. It makes you cherish every single day that you're able to do those things so when you do need to take a break due to a fall or injury you can remember back. I can get back to that strength again," said Stephanie.

Throughout some of the tough times Stephanie stepped back from volunteering with some of her favorite charities but soon realized that volunteering was exactly what she needed to feel better.

"What I really found is that it was my fuel to keep going in every day life. Honestly in our family we've come up with a phrase.  Be brave rebel warrior. And that's what I want people to think...that I was a brave rebel warrior no matter what the circumstances," said Stephanie.

The brave rebel warrior inside Stephanie Stevens is exactly the edge and drive that helps her raise money for cancer research, collect food and school supplies for local students or raise money for AIDS awareness.

"You can keep going on. Adversity is nothing to run from, it's something to embrace and learn from," said Stephanie.

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