Who is Ashley?
I'm a vivacious 24-year-old living with cystic fibrosis. I'm currently in my last year of college, pursuing a bachelor's degree in cinematic arts and technology.
When and how were you diagnosed?
I was diagnosed with CF at birth with failure to thrive. I was born in Colorado. Colorado was the first state in the nation to include cystic fibrosis in newborn screening. I was later diagnosed with cystic fibrosis-related diabetes in 2011 and diagnosed with cystic fibrosis liver disease in 2015. Facing my fair share of obstacles from CF including losing dear friends to this disease, managing new diagnoses, long hospital visits, and caring for my mental health, I have learned to find the beauty in it.
What does a day in the life look like?
I'm a full-time student, social media content creator, work part-time, and on top of that manage my cystic fibrosis. Each day does not look the same, however, on an average day, I like to start with a relaxing morning by having coffee, spending quiet time reading my Bible, then having a light meal. I take my morning dose of Trikafta which has helped make cystic fibrosis more manageable. I have an insulin pump that will help regulate my insulin with each meal. In the evening, I do a breathing treatment, if needed. Which includes my monarch vest and nebulize two different kinds of medication that help open my airways. Due to the improvement of my health caused by Trikafta, cystic fibrosis doesn’t take as many hours of my day, but I do find medications are still needed to help me throughout the day.
What are the biggest hurdles you’ve faced and how did you overcoming/overcome them?
The biggest hurdle that I've had to overcome was when I was diagnosed with cystic fibrosis liver disease. The diagnosis came suddenly and I was hospitalized for a month and had multiple procedures to improve my liver function. I was put on the liver transplant list but was taken off a few years later due to improved liver function. I had to introduce new medications to the already long list of my daily routine. It had flipped my life upside down. The only way that I was able to get through this new diagnosis was to trust God, lean on friends and family, and the cystic fibrosis community. I knew God wouldn’t give me something I couldn’t handle.
What’s one piece of advice you’d give your younger self?
I would tell her younger self to trust God and be present in the moment. It’s so easy to get caught up in what has happened in past or what will happen in the future. God knows what He is doing and it is good. Remember Jeremiah 29:11, “For I know the plans I have for you, says the Lord. Plans to prosper you and not harm you. Plans to give you hope and a future.” Everything happens for a reason, and so I do not doubt that God gave me this disease for a reason. I would not be who I am nor have the platforms I have today to reach other people with or without cystic fibrosis. “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” - Psalm 139:14
What are your current goals in life?
I plan on becoming a director and screenwriter to share inspiring messages, and others' stories through documentaries, and good ol’ classic Hallmark movies.
I have a YouTube channel called Ashley’s Roses. Where I share my life and my advocation for cystic fibrosis. As I pursue cinematic arts I enjoy incorporating a film aspect into my videos. The idea to start a YouTube channel came to me when she was hospitalized and I was searching for YouTube content creators who had cystic fibrosis. At that time, there was only a small handful including Claire Wineland and the Frey Life. Cystic fibrosis affects everyone differently and there were more stories to be shared. I wanted other stories to be heard and to be there for someone who needed someone to relate to.
In 2018, I was introduced to podcasts and loved the creative storytelling aspect of them. In 2020, I started the “Blooming Roses Podcast”. The tagline is, “Where we share stories of growth while blooming in adversity.” Everyone has various trials they have faced and I have had the honor of sharing over 60 incredible stories.