Wow, to say it has been a long and trying 2+ years is an understatement! Having two medically fragile children during a pandemic of respiratory disease has been a terrifying and emotional time, but I am happy to report both Aria and Jack are healthy and thriving. Also, our family is thrilled to have our Great Strides team, Aria's Army...Jack'd Up back this year, IN PERSON for the Lehigh Valley Great Strides Walk on Saturday, April 30! This will be our family's 10th year participating in the Cystic Fibrosis Foundation's Great Strides Walk. That means is it has been an entire decade since first receiving Aria's diagnosis during my pregnancy with her and over 6 years since receiving Jack's diagnosis when he was only a few days old. Yet somehow, the sting of those diagnoses remains fresh. When I think back to the day when we first received Aria's CF diagnosis, Brandon and I have never been more scared for what the future would hold for our sweet baby girl. We were new parents, new to this disease and terrified of the road we were about to walk. But throughout all of it, we were hopeful. A few years later, we welcomed our sweet Jack into the world and were told that, despite all of our wishing, hoping and praying, he too has CF. Once again, our world came crashing down around us and we were terrified, but still hopeful. We have fought alongside our babies every step of the way to do everything we can to keep them healthy, but the reality is their future and quality of life remains uncertain as CF is a progressive disease that can change course at any moment. We feel incredibly fortunate for the recent medical advancements and new medications that are having amazing impact on those with CF. Last summer, a new drug that treats the underlying cause of CF, Trikafta was approved for kids age 6-11. Aria started taking it immediately and Jack followed suit when he turned 6 in January, and we are already seeing the amazing benefits. Trikafta and other “miracle drugs” that are in the current R&D pipeline give us hope, but it is not a cure and the reality is that tens of thousands of children and adults are still living with, and dying of Cystic Fibrosis. However, it is because of the persistency and dedication of the Cystic Fibrosis Foundation and because of people like you, that I am more hopeful than ever for the future of Aria and Jack and for those with Cystic Fibrosis. Please stand alongside of us, stand with Aria and Jack to let them know you support them and that you support our family. Join us for the Great Strides Walk on April 30, or simply make a donation so that someday CF will stand for CURE FOUND.
How can I donate? You can click "Donate to a Team Member" to simply donate to a member of team "Aria's Army...Jack'd Up"
Also, it is very important that you REGISTER if you plan to walk, virtually or in person this year!
Date: April 30, 2022
Check-in: 9:00 AM
Walk: 10:00 AM
Distance: 2 miles
Chapter: Delaware Valley Chapter - Lehigh Valley Office
Event Location: Cedar Crest College, Allentown, PA