Hi friends!
So much has changed for our family since our first Great Strides walk and we are incredibly blessed to update you that Roen continues to be doing amazing in every sense of the word. He loves space, geography and human anatomy and is reading at a level far above his age. He's completely obsessed with his new sister Lennon and is excited to teach her everything he knows.
In the last year Roen has taken over 5,400 enzymes to allow him to digest his food and completed more than 730 hours of nebulized breathing treatments and chest physical therapy to keep him as healthy as possible. Thanks to the medications and treatments made possible by your donations we are so thankful to say that his lungs are 100% clear and healthy and we intend to do everything in our power to keep them that way.
This year is a big year for Roen in many ways. This fall he will be starting pre-K four days a week and we hope by then he will be approved to begin taking Trikafta to help keep his lungs healthy as he is inevitably exposed to the daily germs school brings along.
CF has taken a lot from our family over the last few years especially during the pandemic. It has taken away family time, it's taken away the possibility of Roen's first real vacation (we are hoping to be able to change that this summer!). It's taken peace of mind and left a nagging worry in it's place many days. But when we really think about it, CF has given us so much more than it's taken. It's given us appreciation and gratitude; the ability to notice the good in the little and the mundane things that aren't so little or mundane to us anymore. It has forced us to slow down and focus more on the things in our lives that are really important. It has shown us just how many people love us and how big our army truly is.
Our first Great Strides event almost didn't happen for us. We were so new to CF at the time that it still seemed too heavy and difficult to wrap our minds around, let alone gather up the energy and strength to start fundraising. But our family quietly created the Roen's Roariors team on our behalf and in just a few weeks we had raised over $20,000! Our minds were (and still are!) blown at what that means and what it showed us. It's so very clear that we aren't alone in this.
The last few years have been such a strange, difficult time for everyone and we are looking forward to being able to get back into the swing of things this spring with our first in person Great Strides event since 2019. Being a part of Great Strides has been an incredible, tangible reminder of the love that Roen has brought into our lives and the love that our friends and family have for us. We're thrilled to come together again in person as a support community and continue to the fight to cure CF for good!
Every dollar we raise adds days, months and years to Roen's life. It adds memories to be made and moments of breathing easy, both literally and figuratively for our family and the entire CF community.
We are so blessed to be raising this sweet boy and equally blessed to have the support of each of you as we fight CF together. THANK YOU!
With love and sincere gratitute,
Roen, Nate, Caitlin and Lennon
Connect With Us
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.