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Vail Xtreme Hike 2020

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Raised: $2,257.07

Goal: $2,500.00

My Xtreme Hike Story

  • Inpatient at St. Joseph's- Right before Trikafta!
  • Snowboarding Aspen Post-Trikafta

Hey its Liv! I am 26 years young and I am a person with CF. I have been fighting this disease since I was diagnosed at 12 months. I spent my childhood in Michigan. I was always a healthy kid! I did sports my whole childhood, and mostly avoided long hospital stays or surgeries from my CF. 

When I was 18, I moved to St. Louis for college. After living there for a few years, my health began to decline from battling multiple reccuring lung infections. Between 20 and 26, I spent so many weeks in the hospital, I had lost count. I was inpatient every 3 or 4 months, on IVs for weeks at a time. I decided to switch to online classes, and I became a part-time student. My lung function declined by about 40%. 

In December 2018, I decided to move to Denver. I had been treated outpatient by the doctors at National Jewish for a mycobacterium infection, and I decided that it would be better for me to transfer care to their clinic. I also have a great love of snowboarding, and it has always been my dream to live in Colorado! My health began to improve incrementally after my move and I was hospitalized less that year, but I was still struggling to complete everyday tasks especially during infection flare-ups.

Everything changed in 2019. After a month-long hospital stay from a Rhinovirus infection, I started taking a revolutionary new medicine called Trikafta. My lung function increased in the first two weeks by 15 percent. It was an exciting, emotional time. I saw my future for the first time in years, and it was so bright! My lung function has continued to increase since then. I am looking forward to my graduation (finally!) in August! 

This new medicine has been a complete miracle for me and my family. It wouldn't have been possible without the research support that was given by the Cystic Fibrosis Foundation. There are many who have CF that this medicine cannot treat. There is a lot of research being done, with support from the CFF, to help develop medicines like Trikafta for those who still have no treatments. For the first time in 10 years, I'm able to work out and be active in a real way. So this year, I am training for 6 months to participate in the XTreme Hike! The hike is at altitude in the mountains, and I'm setting a goal of 10 miles. I would love your support in this effort to work towards more medicines like Trikafta to see more miracles in the future! 

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