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We were sitting on her family's back porch, when Elena Lohsen 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.
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 what looks like 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 a crowd.
From Elena’s YouTube video to the Xtreme Hike the family hosts every fall, they are incredibly involved with the Cystic Fibrosis Foundation.
“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.
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Jackie Price was sitting on her front porch when I pulled up to her house. Her dogs came out to my car with a friendly greeting - and that warm, open tone was never broken throughout the entire interview. For 25 years, Jackie has been living with Cystic Fibrosis. It's a rare genetic disease that affects your lungs and pancreas. On top of that, she also has a rare gene mutation of CF, which makes her treatments even more complicated.
After Jackie told me about her birth - how doctors told her dad she wasn't going to make it through surgery, but he told them to go back in because losing her wasn't an option - I realized then Jackie's life has been a miracle from birth.
No, she hasn't been able to go back to work full time since her lung transplant, but she's making it there twice a week. No, she won't be able to get rid of the scars from her tracheotomy and dozens of other surgeries, but she's alive. No, she doesn't look at the average life expectancy for a person with CF because, "It's always changing. Because next year it could be 10 more years." It's been a week since I met Jackie and I'm still running through that interview in my head. I hope her strength, positive outlook and tenacity come across in this story. She is a fighter - no matter how many times she's been knocked down.
If there was ever a family I would trust to put together my house, it would be the DeLee Family. Their house was bright, inviting, color-coordinated and oh-so-organized. Everything had a place and (at least to start on this particular Saturday morning) it was all in the intended places too.
From the corner of the family room, I could see the sterilizing machine that gets rid of germs. It sits next to the dozens of pills and enzymes Fawkes takes every day to help absorb nutrients. Past the front door, you'll see a cart with a vest that Fawkes wears twice a day to break up the mucus in his lungs.
Reducing the time it takes to do these treatment is one of Hudson's biggest hopes for Fawkes' future; he said it would be ideal for Fawkes to just have to take one pill in the morning instead of 30 pills throughout the day. Betsy said she just hopes what they are doing now will help keep Fawkes healthy in the future. "I don't want him to suffer," Betsy said. "I feel like we're making decisions for him to give him the best chance he has." You can help find a cure for Cystic Fibrosis by donating to the foundation: https://metrodc.finestcff.org/ellenbryan.
Just before the interview started, Evan Ransom ran into the family room to sit with his parents and two brothers on the couch. The second he turned to jump into their laps, the back of his shirt came into the frame of my video camera. It said, "I am a fighter."
Cystic Fibrosis is a hereditary disease that affects a person's lung and pancreas. A person with CF must do hours of treatments and take dozens of pills daily to stay healthy. To this point, the average lifespan of a person with CF is about 40 years. But the Ransom Family doesn't focus on that number because new medications are pushing that number even higher.
I imagine that even one day when Evan fully realizes what Cystic Fibrosis is and the reasons behind his medications... he will remain that same energetic, smiling person; full of life and ready to tackle any challenge. Because I believe that motto "I am a fighter" won't just describe the first four years of Evan's life - but every year after it too. You can help find a cure for Cystic Fibrosis by donating to the foundation: https://metrodc.finestcff.org/ellenbryan.  The Ransom Family When you walk into someone's home with a video camera, there's an instant level of trust that I do not take for granted.
You can help write these families stories too... by helping them find a cure.
One book every week. That was the challenge I set for myself on this day last year for my 28th birthday.
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AuthorFrom my TV high heels, to the baseball cap I wear nearly everywhere else... I'm finding my voice in this blogging world. Archives
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