Hi Everyone! 2024 marks our SIXTEENTH Great Strides walk and our first one with a high schooler (hoooooowwwww????)
We are another year into what feels like a completely different life, one I barely dared to dream about when Reid was born. Cystic fibrosis dictated, limited, and affected everything we did before Trikafta. We thought about it every.single.day and now... sometimes... I forget he has it. A change for the better is a change nonetheless, so this new life has come with its own challenges and growing pains but I feel like we're settling in. Living with disease can make you a bit of a cynic, it preps you to expect the worst so you don't get your heart broken. I spent a lot of time waiting for Trikafta to not work, but I'm thrilled to report that it just keeps working.
Reid continues to grow taller, gain weight, breathe without coughing, fall asleep without coughing, recover from colds quickly, and enjoy all the energy that comes from a body not constantly fighting off illness. He loved being on the freshman basketball team and is gearing up for his first high school lacrosse season. He gets up at 6am, makes his breakfast, packs his lunch and takes all his medications on his own. He does one breathing treatment (nebulizer + vest) per day which is down from two. Right on time for high school his routine has become manageable rather than overwhelming.
Trikafta has been amazing and a miracle and literally seems like an ON/OFF switch for cystic fibrosis, but it is not without its challenges. We continue to support CF research because while Trikafta is a life-changing treatment, it is not a cure.
A drug you have to take for life comes with side effects you have to deal with for life. We have watched the research come this far in the short 14 years Reid has been alive, watched these amazing scientific advancements in action, so how could I not 100% believe that we can take this thing all the way and eradicate cystic fibrosis? I know with every part of me that we can.
As always, thank you from the bottom of my heart for donating towards a cure and for keeping Reid in your thoughts.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.