Emily's Garden

YOU've Let Me Live!

When I say you, I literally mean every single person who has supported me on this journey. Every single dollar you have raised, has led me to the life I am living today.

I was sick off an on with pneumonia throughout the early years of my life and it wasn't until I was three years old that my pediatrician suggested I be tested for Cystic Fibrosis. He was almost positive that I didn't have it, but thought I should be taken in for a sweat test just to be safe. Long story short, my test came back positive.
I was admitted to the hospital in December of 2000 and received my first picc line to help flush my lungs with iv medications.
My daily routine changed in the blink of an eye and medications and treatments quickly took over large chunks of my day.
The most important treatment was my chest therapy, which consisted of laying on a cheese wedge and having my parents pound on my back to help move the mucus around in my lungs as I coughed it out.

I received my first Vest a few years later, which does my chest therapy for my parents so that they don't have to, or get to - (LOL), hit me anymore. I got into the pattern of going into the hospital for a piccline and getting sinus cleanups about every other year. It was a pattern I was too familiar with and my list of medications seemed to grow as I did.
But I have to say that I never necessarily considered myself sick or realized the condition of my health until it changed.

In February of 2012 I began a study to take a drug that excited almost anyone who talked about it. I qualified to take this drug because it helps people with the G551D gene, which I have. Less than 5% of the CF population has this gene.
The drug was called Kalydeco and consisted of ground breaking research.
Kalydeco, a pill taken twice a day with fatty foods, practically reversed my CF and made my body think it no longer had the disease. It worked to almost literally make me symptom free.

As I continued to take the drug, my medication and treatment list got shorter and shorter.
I currently take vitamins, enzymes with my food to help my body digest what I eat, and my Kalydeco.
I do one Vest treatment a day for 20 mins due to my high activity level and THAT's IT.
After a few years on Kalydeco I went back to take another sweat test like the one I had when I was diagnosed and the test was unable to recognize that I have CF!

YOU've Let Me Live!

And if it wasn't for all of your help letting me live, so many aspects of life right now would be totally different.
I have no idea if I'd be a student at the University of Dayton, a school that I love so dearly and the school that's helped me gain my independence and freedom. I'm a Buckeye born and raised but OSU just didn't have the same feel that UD did when I visited.
There's a good chance that if I wasn't on Kalydeco today I'd still be living at home and possibly commuting to classes.
As much as I love my parents and being at home with them, I am so thankful to be experiencing college in the way that I am.

I cheered for the football and basketball teams for two years at UD, which is something that I had been doing my whole life.
I made some of my closest friends through this team and some of my favorite memories from college so far were made in that arena. For our junior year, my roommate and I decided to end our cheerleading careers a little early; not because of my health in any way shape or form, but because I simply could and was ready to close that chapter of my life.
I am an early childhood education major, have a part time job while being a full time student and am an active member of my sorority. This school year I moved into a house with five of my close friends.

YOU've Let Me Live!

You allowed me to grow, to step out of my comfort zone and most importantly realize that now-a-days, there's simply no limits on my life. You've taught me a lesson that I take day by day, to live positively and to go with my gut because you never know what blessings are coming right around the corner.
Every single one of you have changed the face of Cystic Fibrosis. You've brought Kalydeco and Orkambi into this world, both drugs that weren't even imagined when I was diagnosed 17 years ago.
You're donations have impacted the research that is needed in the Cystic Fibrosis community. You are such a vital factor in making CF one day stand for Cure Found.

My family and I could not be more thankful and appreciative of all of you.
Thank you from the very bottom of my heart for letting me, and so many others, truly Live!