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20 Moments in a Life of Rarity

Sometimes, I think my daughter’s cystic fibrosis is the least rare thing about her. She dazzles brighter than a thousand suns and lives with a gusto entirely her own. Here are 20 moments in my seven-year-old’s life of rarity.

Advocating for the Rare

rare  /rer/
adjective
(of an event, situation, or condition) not occurring very often. "a rare genetic disorder"

I never thought of myself as rare, but a disease that affects less than 200,000 Americans at any given time is considered rare. Cystic Fibrosis affects less than half of that number!

Advocacy: Screaming Out With Half a Breath

FL Capitol Lighting

When I was six years old I remember my first TV news interview about cystic fibrosis (CF). I remember being shy, timid, and hiding in my mothers arms only able to answer yes or no questions. I was afraid of judgement, attention, and worst of all, pity. I did not realize that this was my first platform to have a voice. I guess I did not realize how important it is to have a voice when very few people truly understand what it means to have a rare disease.

To What Extent

It’s the act of being entrusted with something of value. Something so precious to you and that you hold so dear. It is that something that has so much value, you feel that you are a keeper of such an object.  

How did you protect your first toy? That entry level Barbie Doll. The Back to the Future Hot Wheels car you received on your ninth birthday.

How did you protect your high school class ring? The ring that signifies your accomplishments of youth, the first step into adulthood. Beginning the clamber up the ladder of maturity and anticipated success. 

Finding Connections. Fighting Together

My older brother Ray was also born with CF. He was the only person I knew with CF for most of my life. You could say he was my CF role model since Ray was five years older. He got a picc line before me, was hospitalized before me and gave me a heads up on the nasty glucose intolerance tests that were coming my way.

CF Mom in Charge. Rest Easy.

It was an afternoon in the middle of September in the state of Kansas, in the city of Andover, on North Maize Road. I should have been aware of the spunk and tenacity that would encompass the ladies with whom I was about to have lunch with. My mother, a Cystic Fibrosis mom, was also born and raised in Kansas.

STROLO Star: Kyle O'Tain

This past spring the CFLF launched the STROLO Star program, where we spotlight bright stars in our CFLF community. This program aims to share more stories from members of our CFLF community, including Recreation Grant recipients, volunteers, CFLF board members, CFLF Blog writers, STROLO-U instructors, sponsors, and more.

Pace It Like A Swim Practice!

Something I am still in the process of learning is that Cystic Fibrosis does not define me. I was diagnosed with CF at birth, and it is a big part of who I am. It has shaped the way I live and the way I see the world. CF is a big part of me...but it isn’t ALL of me.

A Day in the Life of CF: Episode 1 by Vicki Thompson (Re-share from 2015)

From Erin: This week we decided to publish one of our favorite articles from the CFLF blog archive. We've been thinking a lot about our good friend, and former blog contributor, Vicki Thompson, who wrote the following piece in 2015. It's been three years since she passed away (from complications of CF) but her energy and joy is felt throughout all of her writing. This one especially as we read AND get to watch a day in her life and remember her radiance, determination, and strength that we all admired and continue to be inspired by.

 

A Warrior and His Protector

Life begins with uncertainty. Who will you become? What will you become? Why will you become it?

You need a champion. You need an advocate. You need a protector.

One evening at an eatery in North Rock, Kansas, I found these traits in Cystic Fibrosis Warrior mother, Terri Mathieu-Erker, and her nearly two-year-old CF Warrior, Andrew, sitting at double tables, just to the right of the entrance.

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