Skip to main content

CF Walk 2012

Here is my letter for the CF Great Strides Annual Walk. I hope you enjoy reading it, and maybe even consider sending it out to a friend or two. Let's make CF stand for Cure Found!


Dear friends and family,
                  I hope you all have had a very blessed year since my last letter. Thank you so much for your continued support, encouragement, and love, helping me fight in my battle against Cystic Fibrosis on a daily basis. The year 2011-2012 has been a year full of change, excitement, and struggles. You may remember from last year that I was fighting an aggressive bacteria that caused me to need continuous IV antibiotics. I finished this treatment in August, right before heading to college. It felt so amazing not to be accessed to my port all day, every day! In August, I started coughing up tablespoons of blood, which was extremely scary. I had to have emergency surgery the first Friday of my freshman year in college. Thankfully, I haven’t had any more major lung bleeds since the surgery. I also received a routine course of IV antibiotics in December to help fight the bacteria that consistently wreaks havoc in my lungs. I continue to struggle with maintaining my weight, and, not unlike last year, the talk of a feeding tube threatens me often.
                  Despite the challenges and frustrations of living with Cystic Fibrosis, I refuse to let my CF define who I am! I entered my freshman year of college at Baylor University in August and have been incredibly blessed by the experience. I love being a Baylor bear and everything that comes with it—a Heisman trophy winner, an undefeated women’s basketball team, a challenging education, and a school that relentlessly strives to honor God in everything we do. God has taught me so much about myself, loving Him, caring for others, and honoring Christ with my actions. I have matured and become a more independent young woman since going to college. I understand more about my health and how to take care of myself, and, as always, I work hard to do my best in everything. Last semester, I received a 4.0 GPA and am striving to do the same this coming semester. I attend Highland Baptist Church and have gotten plugged in with a Community Group (CG). I have made some of my best friends through my CG and am so blessed by them. I am a part of Baylor Buddies, as well. As a buddy, I visit a girl at South Waco Elementary School for one hour once a week and provide stability, a role model, and a friend for her. I am also pledging to be part of Alpha Phi Omega, a national service fraternity. I love pouring myself out to the community of Waco, serving them however I can. It has definitely been difficult this year, starting over with having to tell people about my CF and wishing to be “normal,” but I have learned so much about myself and other people.
                  We live in an exciting time in the fight against Cystic Fibrosis, my friends. Every day, scientists are getting closer and closer to finding a cure for CF. The FDA recently approved a new drug called Kalydeco, which treats the cause of CF in people with a specific type of mutation. Although this drug only helps a small portion of CF patients, the company that created the drug is working ferociously to find similar medicines that will help a broader range of CF patients. How awesome is that?! There are four ways you can help people like me with Cystic Fibrosis. First, you can donate money to the Cystic Fibrosis Foundation. All money raised goes directly to the CF Foundation, which provides the funds needed to continue research and drug development. Second, you can come out to the Great Strides Walk at the Austin Zoo on May 5th to support those with CF. Unfortunately, I have a Spanish final that day, so I will not be able to attend the walk. However, my family will be there and would love to have your support, and I will be there in spirit! You can follow the link below to donate money online and/or sign up for the walk. You can also send money to my home address listed below (make checks payable to the Cystic Fibrosis Foundation), and my family will turn it in on the day of the walk. Third, please send this letter to one or two friends and ask them to consider donating money or joining you the day of the walk to raise awareness about Cystic Fibrosis. Lastly, you can continue to be the amazing, encouraging people that you are to me! I am unable to express in words how grateful I am for each of you. Your thoughts, words, and prayers are always appreciated! Let’s work together to make “CF” stand for cure found.
Love always,
Emily


Comments

Popular posts from this blog

CF Letter 2020

Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr

CF Letter 2019

Dear friends and family, I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day! Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health. I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb

The spirit of giving

It’s the end of 2017. That means it’s time to send in those end of year donations. Want to give to some amazing charities actually doing good in the world? I’ve compiled a list for you!  The Cystic Fibrosis Foundation- Obviously, I’m biased toward CFF. They fund amazing research that is saving people’s lives! Don’t you want to be part of that? Not only that, but 90 cents of every dollar goes directly to advocacy and CF research. If you donate to the Cystic Fibrosis Foundation, you know your money is going to be spent wisely and is going to make a difference. Since cystic fibrosis is an orphan disease (that means it’s really, really rare), people with CF rely on your donations to fund research. As well, Congress just cut the orphan drug tax credit, meaning companies are not going to get as much incentive for studying orphan diseases and creating drugs to treat them. The CF Foundation needs people like you to donate to CF research so we can find a cure for CF SOON. —www.cff.org