My name is Ronny Smitley. I’m 31 (32 next week! ) years old living in Cleveland, home sweet home! I was diagnosed with Cystic Fibrosis when I was about 8 months old. Obviously, I remember very little of the early years, but I can tell you what it has been like more recently.
Up until 2019, I was averaging at least one hospital admission per year for a pulmonary "tune up." That all changed in October of 2019 when the FDA approved Trikafta, the latest in a string of successful gene modulators. This new medication completely changed my life for the better. For the first time, I was able to train for and successfully run a 5k, I was able to gain and maintain a healthy weight, and I was able to begin to plan for my future with less worry that my future would be cut short. Until the start of Trikafta, 31 was an age I was very hesitant to look forward to, thinking I might not make it. Now, not only did I make it here, but I am at my healthiest and happiest I have ever been! I am able to work full time doing what I love, adventure with my boyfriend, keep up with the little ones (both my nieces and my boyfriend's daughter), and have the energy to manage two rambunctious puppies!
While this new drug has been a total game changer for me and many others, it is still not a cure. There are still many CFers out there who cannot benefit from it for one reason or another. There are others still who we lost before they had the chance to see their "Trikafta Day." For this reason, we continue to fight daily. For these people, we shout even louder for a cure to be found.
This year, my family and I have an extra reason to fight even harder! In November, my brother and his wife welcomed their third child and first son, Jackson. He had a challenging start in this world with several health issues, and was also diagnosed with cystic fibrosis (double f508Del, just like his auntie). This diagnosis poses complications beyond the "typical CF stuff" due to other difficulties he faces. The little guy has been through more than his fair share of hospitals and procedures in a short 5 months. He is so loved by his parents, 2 big sisters, grandparents, and especially his auntie! Jackson is the reason we are fighting even harder, so that he may never need to understand the full extent of living with cystic fibrosis.
I have been involved in the Great Strides CF walk for nearly 30 years. This May will mark my 29th year of being involved with the walk. It is always a fun day to go to the zoo with your family and friends and to help try and find a cure. Rain or shine we always have fun. The walk is an opportunity to step out and show that we are better together, we fight as one for all who are affected.
Each year I participate, I am reminded that I am never alone in my fight to breathe. Events like Great Strides unite people from all walks of life who have been affected by CF in one way or another. Patients, family members, friends, and caregivers all come together to show support and raise awareness. Each year brings something new. Whether it be new research announcements or new challenges to be faced, each year is met with new faces to help offer support. I have built lifelong friendships with people that I initially met at the walk here in Cleveland. Those friends are the people I turn to when I face new struggles in my fight.
I encourage you to reach out and get involved. Remember, you are never in this battle alone. As fighters, we need each other to help make CF stand for “Cure Found” and to help make CF a thing of the past.
Breathe easy, fighters!
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