My Xtreme Hike Story

Many times in life, when we want something that we think is out of reach, we are told “don’t hold your breath”. You see, 16 years ago while dreaming of treatments that may prolong Grace and Joey’s lives and the possibility of seeing a cure for cystic fibrosis, we began to hold our breath. Over the years we saw new treatments emerge that addressed the underlying cause of CF - Kalydeco, Orkambi, and Symdeko - for a select few people with the disease. With each new treatment our family celebrated for those who were able to benefit from them, and continued to hold our breath, hoping that someday soon we would be able to celebrate a treatment that would help Grace and Joey. On December 23, 2020, we received the news that Grace and Joey’s mutation were now included in the use of Trikafta! Finally, we released the breath we had been holding. While not a cure, we knew the potential this drug could have, especially for Grace, whose CF was rapidly progressing which resulted in complications that we were having trouble staying ahead of.

For the past year, our hope continued to grow as we saw improved lung function and reduced number of necessary daily medications and treatments. We witnessed a full night of sleep not interrupted by constant painful coughing, and most importantly we witnessed a bit of joy in a sweet girl who was given back the gift of being able to attend school, hang out with friends, and for the first time in a long time, not have any hospital admissions.

Unfortunately, as it usually does, CF finds a way to fight back, and last month we received a call that Grace would have to temporarily stop taking Trikafta due to the effect it is having on her liver. As with any medication there is always a risk of side effects, and this is one that Grace had been tested for regularly. So again, we hold our breath and hope that next month her levels are better and she can start taking Trikafta again. We hold our breath that maybe the next big news we can celebrate is a CURE! The good news is that her bloodwork this month showed improvement and she can again begin taking Trikafta, but we can't let that breath go just yet as we know how fast CF can take it away.  

This year Grace and Joey’s Gang is again taking on the Xtreme Hike for Cystic Fibrosis. So many of you have supported our fight against CF for years and we are so grateful for the progress that has been made because of your donations, you have all been a part of making history and changing the lives of those with CF. Please continue to support us as we fight to find a cure for all those with CF, we are so close!

We can’t cross the finish line without you!

Thank you,

Rob