When Hannah Setzer was born, doctors told her parents that she would likely never walk or talk normally.
Hannah has cystic hygroma, a rare disorder that causes fluid-filled sacks to form in the body due to a blockage in the lymphatic system. This means she needs feeding tubes to eat and drink and a tracheostomy tube to breathe.
“I was born with millions of cysts in my head, neck, and esophagus, meaning I can’t swallow, so I use a feeding tube, and they were also in my airway, which is why I have a tracheostomy tube to breathe,” Hannah said.
She has undergone about 60 reconstructive surgeries so far, and she’s only 30 years old.
Hannah has always been a physically active person, but in 2018, she made a New Year’s resolution to work out for 30 days straight. Once she got started, she never looked back. It’s been three years now, and she’s still going strong!
Hannah says mixing up her routine is the key to sticking with it.
“I have done a little bit of everything — yoga, running, weightlifting, kickboxing, and even random workout videos on YouTube,” she explained. “It’s been so fulfilling to feel strong and powerful and have muscles I never thought I would have.”
After her friends suggested that she would be a great role model for others struggling with fitness and disabilities, Hannah started an Instagram account and began uploading workout videos. Her page quickly grew to more than 25,000 followers, and she is focused on encouraging the world with her “Move with me!” videos.
“On Instagram I didn’t see a lot of people with disabilities who were exercising and moving. I felt maybe I should do that,” she said. “I had never seen someone with a feeding tube doing what I was doing online or in magazines, so I thought maybe I should be the first person to do these things — so no one else can say I haven’t seen someone who looks like me.”
Even better, Hannah shares her life with her followers. She recently adopted a son, one of four teenage boys that she and her husband are fostering. She also shares the medical tips she has picked up over a lifetime of living with a feeding tube, and she’s an advocate for others who are living with disabilities in her home state of Virginia.
We all know that people can be cruel to those who look different, but Hannah takes it all in stride.
“Out in public [people] will stare at me, point, or talk about me — I don’t care about that,” she said. “It’s tough because I think so many people are always looking for outside validation. Just accept it and be proud of who you are and the things that you are doing, and that definitely radiates.”
Hannah is such an inspiration to the world! She truly does radiate joy and self-love, and her determined, inclusive approach to fitness and social media has made fans of us as well!
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