A DC family's mission to find a cure for Cystic Fibrosis

When it's your child or brother or sister diagnosed, it's not just that person affected.

WASHINGTON(WUSA9) - We were sitting on the Elena Lohsen’s back porch, when she told me she doesn’t see her life as that different than her peers. This was amazing to me considering everything I know Elena must do in a single day to combat Cystic Fibrosis.

I wasn’t really sure if I believed her actually. Surely she knows how much harder she’s had it in life, right? How most people don’t have to take pill after pill after pill just to maintain weight? Or what about her family’s decision to homeschool her and her sister to reduce the risk of Elena being exposed to germs that could land her in the hospital for a couple weeks?

But then her family pointed me to a YouTube video that Elena made several years ago now to raise awareness and money for Cystic Fibrosis.

As I watched photos of Elena’s life pass by, I actually started to believe it when Elena told me she doesn’t think she’s all that different. Because if you look closely at the photos, one thing is pretty obvious: Elena doesn’t let CF hold her back from living a full life.

The photo that finally convinced me was one of Elena sitting in an airport with her vest on doing a CF treatment. It looked completely normal, just part of her routine, to wear that vest. Even in the middle of an airport.

Her mom Sue said to Elena very early on in the interview, “I mean, everybody’s got something. And you've got CF.”

That statement seems to be the theme for the Lohsen Family. Yes, Cystic Fibrosis is a part of their daily life, but they’re making it work.

In some ways, it seems that Cystic Fibrosis doesn’t define their day-to-day as much as it does their overall mission in life. That mission is to find a cure for CF.

From Elena’s YouTube video to the Xtreme Hike the family hosts every fall, they are incredibly involved with the Cystic Fibrosis Foundation.

Sue said if the families impacted directly by CF don’t raise money and awareness for this rare disease, who will? “We have a moral obligation to raise money for our children,” as she put it.

Elena raises that awareness just by living her life as she does. This fall, she’s trading in homeschooling for a classroom. She’s well aware of the questions that will come her way but sees it as a chance to teach people about Cystic Fibrosis.

“I'm sure I'll get a lot of questions at lunch time about the pills I have to take,” Elana said. “So I think that will be cool educating some people.”

You can help find a cure for Cystic Fibrosis by donating to the foundation: https://metrodc.finestcff.org/ellenbryan.

© 2017 WUSA-TV


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