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Third Times A Charm

I wrote this blog post to kick off organ donation awareness month by sharing my journey to ‘new lungs’. I was sitting in a chair in a side conference room on the cf floor of Children's Hospital Boston. My mom was there along with a few of my doctors and nurses and my sister on speakerphone. My CF team wanted to have a serious conversation about my health. I had recently been admitted to the hospital for the fourth time in four months and this time it was a more serious admission.

34 Years

Very soon I will celebrate my birthday. It’s a big one, especially for someone with Cystic Fibrosis. At the end of March, I will hit the big 5-0. An age that most people dread, most people hide, and most people reach. Reaching 50 years old is never a given and that is even more so within the CF community.

If You're Reading This, You're Alive

I should preface this by saying that sometime over the last few years or so I started to have a really hard time writing these blogs. I would start writing one but then second-guess and doubt everything that I was saying. They all felt so “preachy,” like I had it all figured out, which couldn't be further from the truth. Everything I write in this blog are things, or advice, I’m still working on myself. So with that being said…

Getting Through This

When the pandemic started, I did not know much about Covid or how serious it was, all I knew was that it is something I did not want to get. After learning more about it I was nervous about what it could do to a person like me with cystic fibrosis. Watching the news reports and listening to the radio added to my fear and worry of contracting the virus. Being out of work and living alone heightened my anxiety towards this virus, if it were not for my emotional support animal Peanut Butter being by my side and taking my mind off the fears of Covid I would have lost it.

STROLO Star: Martha Garvey

The STROLO Star program is a quarterly spotlight of bright stars in the 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.

This Winter we had the opportunity to speak with the talented and inspirational, Martha Garvey.

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.

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