Hi, my name is Allie Levine and I am 16 years old. I was diagnosed with Cystic Fibrosis when I was just 3 weeks old and that was the beginning of a strict daily schedule of medications and treatments that continue to this day. Cystic Fibrosis (a.k.a CF) is a genetic disorder that effects about 30,000 people in the United States, and it can cause problems with internal organs including the lungs and pancreas. Because of this, I have to do quite a bit every day, including: Taking enzymes before I eat anything, taking extra vitamins, taking two different inhalers, taking two different nebulizer treatments, spending 40 minutes each day using a chest percussion machine called the Vest, and much, much more.
And while CF can be very challenging to live with, I don’t let it define who I am. I was very busy when I was younger playing volleyball, participating in gymnastics and Girl Scouts, and I would swim whenever I had the chance. I also spent a lot of time playing with (and annoying) my younger brother Ben. I’m not as active as I used to be…but that has nothing to do with CF…It’s because I’m 16 and lazy! And while I try my hardest to not let CF hold me back, there are times where the reality of my situation can’t be ignored. This was the case when I had to be admitted to Children’s Hospital in the summers of 2016 and 2017 in order to get what is called a “tune-up” by many in the CF world. My Pulmonary Function Tests (PFT’s) were not where they needed to be, and I had to spend 12 days in the hospital one summer, and 13 days the following summer…Not fun.
There have been some silver linings to having CF, and one of them is the annual Great Strides Walk. This walk is the biggest yearly fundraiser for the Cystic Fibrosis Foundation, and it’s a special day where all of my family and friends get together to celebrate the amazing gift that is ME (or, it’s because everyone is raising funds to find a cure). My team’s name is Allie’s Alliance, and since our first walk, we have raised over $240,000! Another silver lining was that I was able to go on a Caribbean cruise with my mom, dad and brother thanks to Make-A-Wish Colorado. During that cruise, I was able to get a personal tour of the ships cabin from the Captain, and I was able to meet the cast from each of the ships nightly performances. It was truly amazing!
I feel that we are so close to finding a cure. There are some amazing new medications/treatments in the CF pipeline right now, including a new drug study that I’m currently participating in. I will be graduating from high school next year, and I’m looking forward to the next chapter of my life when I go to college. This has been possible for me (and others like me) because of those who have donated before, and to those who will donate in the future. We will find a cure! Thank you.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.