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The Lohsen Family: Finding a Cure for Cystic Fibrosis

8/24/2017

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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. 
​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.
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Elena Lohsen
​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.
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​Her mom Sue said 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 make 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 being 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 moving from homeschooling to 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.
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The Lohsen Family
“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: A Long Road with Cystic Fibrosis

8/24/2017

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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.
​Jackie welcomed me into her home without any hesitation and let me poke my head into different rooms to find the best lighting for an interview (which ended up on the gorgeous porch out back). She didn't seem nervous at all - and over the span of the couple hours, she asked me more questions about the news business than I asked her about Cystic Fibrosis.
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As I drove away from her house, the interview started to really soak into my brain. "She's had several near death moments in her lifetime," I thought, "And maybe the worst of all within just the last year."
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Jackie Price
​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.
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​At this time last year, Jackie had just woken up from a medically induced coma. What was supposed to be a routine sinus surgery (something she's been through six times before), turned into blood getting into her lungs and an infection that spread quickly. She stayed in the hospital for nearly five months, and even when she was released, doctors told her it would take one week of recovery for each day she spent in the hospital.
 
So now she's dealing with (1) Cystic Fibrosis, (2) a lung transplant, (3) is on a waiting list for a new kidney... and then she mentions that she's diabetic too.
​If there is anyone who has a right to complain about the cards life dealt her, or sob while telling her story, it's Jackie Price.
 
But Jackie didn't linger on the negative too long. Sure, she said, "it's been a long year" and "there have been really hard days," but she quickly ended each story about her trials with a positive.

​​No​​, the research isn't as far along for her gene of CF, but they brought her and her brother to Boston for testing - so they're working on it.
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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.
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The DeLee Family: Life with Cystic Fibrosis

8/23/2017

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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. 
​We decided to do the interview in the center of their family room, so I set up the camera in the corner. 
 
Over the next two hours, it became clear as Betsy and Hudson DeLee pointed to things from the couch that they use daily -  their family room mirrors their own lives - every nook and open space is filled with Cystic Fibrosis. 

​When the DeLee's son, Fawkes, was first diagnosed with Cystic Fibrosis at his birth almost four years ago, their lives became consumed with one goal: to keep Fawkes healthy. ​
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Fawkes DeLee
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.
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Part of the Fawkes' Daily Medications
​This is their daily life. Vest treatments, enzymes, pills, keeping everything very, very germ-free... 
 
Hudson said 'time' is one of the biggest factors with dealing with CF. The time it takes to sterilize items, fill pill bottles and negotiate with a four-year-old on why he has to put on a treatment vest again instead of going outside to play with his friends.
​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.
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The Ransom Family: I am a Fighter

8/23/2017

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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." 
​I am a fighter. 
 
The motto for Evan's life today and from the moment his story began.

​​Evan is the youngest of the three Ransom family brothers. He has more energy than the rest of the family put together, but slows down enough to give out just as many hugs and smiles as he receives. 
 
He came into this world eight weeks early. Something wasn't right with his stomach, and after some testing, doctors told Marty and Greg their son has Cystic Fibrosis. 
 
Greg quickly looked up CF on his phone and said what he read, "scared me to death."
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Evan doing a CF Treatment
​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. 
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Great Strides Walk for CF
​So instead of dwelling on any of the facts Greg looked up on the Internet that first day in the hospital, they've thrown their energy into fundraising for a cure. Both teachers, Marty and Greg are also getting their schools in on the awareness too. 
 
At home, Evan doesn't yet know he's any different. His brothers take a big part in this, even sitting with him during vest treatments to help pass the time. 
​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. 
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The Ransom Family
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A Family's Trust: Telling Four Stories of Cystic Fibrosis

8/17/2017

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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. ​
Then when the family tells you a story that is deeply personal to them and is truly their entire world... that becomes an overwhelming responsibly to get their story right. 

I've felt this level of trust four times this week.​

​​Four families who deal with the devastating disease Cystic Fibrosis welcomed me into their homes. They put on microphones and answered some really tough questions... like where does your hope come from when the average life expectancy of a person with CF is around 40-years-old.
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​They let me film their daily routines: taking pills and enzymes, doing vest treatments, keeping a house absolutely germ free...

​But these story shoots weren't just about the downside of disease either. They are also about hope. The drive to stay positive and have fun by throwing a football in the front yard, playing the piano, or chasing a cat around the house.
 
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​These are people's lives... and now it's my responsibility to tell their stories to you in just a few minutes. It's one of the hardest parts of this job. Taking that trust from a family and turning it into a reflection of who they are and what they're fighting for in the span of a couple minutes. 

In this case, all of the families I talked to are all united in one fight: finding a cure for Cystic Fibrosis.​
These stories are mostly to bring awareness to this disease, but also to bring additional hope - raising money for more research through the Cystic Fibrosis Foundation. 

​
I know I haven't told you their stories yet. So there might not be the motivation to click on this link and make a donation to end Cystic Fibrosis. But I promise you, for these families, their lives depend on these donations and additional research.
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You can help write these families stories too... by helping them find a cure.
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Book Challenge: One book a week

8/1/2017

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One book every week. That was the challenge I set for myself on this day last year for my 28th birthday.
Did I get to 52 books? Sadly, no. But, I averaged three books a month, which is more than I had been reading.
​
So here's the list of 37 books I read over the last 365 days. The year started with the heavy hitting Harry Potter (which I don't recommend you read at all - one of my least favorites on this list).


I'm adding a * by the books I DO highly recommend though. There are some must-reads on this list.
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1 - Harry Potter and the Cursed Child - J.K. Rowling
2 - Nice Girls Don't Get the Corner Office - Lois Frankel
3 - Year of Yes - Shonda Rhimes 
4 - Find Your Extraordinary - Jessica Herrin*
5 - Getting Real - Gretchen Carlson 
6 - Settle for More - Megan Kelly 
7 - Heaven Came to Me - Marlene Sommers
8 - Shaken - Tim Tebow 
9 - Act Like a Success - Steve Harvey* 
10 - The Happiness Dare - Jennifer Dukes Lee*

11 - Designing Your Life - Bill Burnett & Dave Evans
12 - You are a Badass - Jen Sincero* 
13 - Between Breaths - Elizabeth Vargas
14 - The Energy Bus - Jon Gordon 
15 - My Pocket Yoga - Adams Media
16 - Own It - Sallie Krawcheck 
17 - 7 Women - Eric Metaxas
18 - Talking As Fast As I Can - Lauren Graham* 
19 - Health Secrets - Readers Digest 
20 - The Art of Social Media - Guy Kawasaki & Peg Fitzpatrick 
21 - Above the Line - Urban Meyer* 
22 - Leave Your Mark - Aliza Licht*

23 - Born to Blog - Mark Schaefer and Stanford Smith
24 - The Body Reset - Harley Pasternak 
25 - All Marketers are Liars / Storytellers - Seth Godin
26 - Meditations from A Simple Path - Mother Teresa 
27 - It - Paula Froelich 
28 - On Becoming Fearless - Arianna Huffington 
29 - The 15 Invaluable Laws of Growth - John Maxwell
30 - When No One Was Watching - Carli Lloyd*
31 - Daring Greatly - Brene Brown*
32 - The Boys in the Boat - Daniel James Brown
33 - Journey to a Better You - Joel Osteen 
34 - Every Body Yoga - Jessamyn Stanley
35 - Big Magic - Elizabeth Gilbert* 
36 - Still Foolin' 'Em - Billy Crystal 
37 - No Greater Love - Mother Teresa *​
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