A woman, who doctors said wouldn’t live past her first birthday, has defied the odds by not only living well past her diagnosis but by becoming a fitness blogger.
Living with a feeding tube and unable to close her mouth or eyes, Hannah Setzer may not look like a typical fitness influencer – but that’s exactly why she’s doing it. The 28-year-old was born with a rare genetic condition; cystic hygroma, which causes fluid-filled cysts to grow on a new-born baby’s head and neck area.
A block in Hannah’s lymphatic system caused fluid-filled cysts to form in her neck. When she was still a baby, doctors removed her cysts, accidentally removing some facial nerves at the same time; as a result, she still cannot smile or close her mouth and eyes.
Hannah is used to getting stares from strangers when she goes out in public but together with her husband Brandon, she is adamant they won’t stop her from doing anything.
Hannah told BTV: “Pretty much anywhere I go people stare at me, whispering to their friends, what’s wrong with her face”. Brandon said of those who judge them as a couple: “If someone doesn’t want to get to know someone because of their appearance, shame on them, not on me”.
Hannah now hopes to inspire other disabled people to stay fit and healthy; her Instagram page ‘Feeding Tube Fitness’ has over 2,000 followers. She said: “There is no reason that people with disabilities should be left out in any community and definitely [not] the fitness community”.
With thousands of views and hundreds of likes on each of her posts, Hannah is happy to have become a point of reference for other disabled people who are wanting to get into fitness.
“I’m always happy to educate people, nothing offends me and at the end of the day if somebody doesn’t want to take the time to get to know me that’s their loss not mine”.
Hannah has both a trach to help her breath and a feeding tube because she is unable to chew food.
She said: “I eat through a feeding tube and that’s how I get all my nutrients in. “I definitely have to be careful with it, sometimes it hurts sometimes it doesn’t but there’s not anything that I can’t do”.
Hannah met her husband Brandon three years ago and they have been married for just over one. Brandon said of Hannah: “She’s got a big heart and I can’t imagine spending time with anybody else, we get along and enjoy the same stuff”.
Since Hannah looks different because of her condition, people often assume that she wouldn’t be able to follow a fitness regime. “I think when people don’t look how our society expects them to look they just assume that person can’t do anything – like there is really nothing I can’t do”.
Hannah has to deal with a lot of judgement and prejudice from some people who are unable to see past her looks. Unfazed, Hannah always has a positive attitude: “Nothing offends me, at the end of the day I have an awesome husband and an awesome family and friends, I’m not missing out on anything”.