This will be our family's 8th year participating in the Cystic Fibrosis Foundation's Great Strides Walk. That means it has been nearly 8 years since first receiving Aria's diagnosis during my pregnancy with her and over 4 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 in our lives 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 alognside 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.
Recently, there have been incredible medical advancements and a new medication, Trikafta, that treats the underlying cause of CF and is changing the lives of many with CF for the better. Currently, the drug is only approved for patients 12 years old and up, but I am hopeful it will benefit Aria and Jack exponentially more than their current treatment and medicine regimen. But, our work is not done. Trikafta gives 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 and the median life expectancy for someone born today with CF is still in the 40's.
There are no days off from having CF. Aria and Jack do nebulized breathing treatments and chest physiotherapy 2 times a day, EVERYDAY to help move the thick mucus that can build up in their lungs and potentially cause life-threatening lung infections. They regularly see a Pulmonologist, a Respiratory Therapist and a Nutritionist to monitor their health and be ready to act with a treatment plan for any bump in the road that may arise. They get chest x-rays and blood draws more often that any little one should. They are already very aware of "what can make them sick" and that they have to be more careful than their peers in regards to hand washing, covering their cough, not drinking out of the school water fountain, and not playing in the school's outdoor sandbox for fear that it harbors dangerous bacteria that can do irreversible damage to their lungs. But most of all, they are incredibly smart, adorable, sweet, resilient and strong kids that take on each day with a passion for life.
Our children are our world and we would truly give anything to have them not have to face this awful disease.
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 in Allentown on May 2, or simply make a donation so that someday CF will stand for CURE FOUND.
Once again, my incredible company Assurant, has generously agreed to support our campaign! The Assurant Foundation will match dollar-for-dollar the funds raised by our team to support the Cystic Fibrosis Foundation up to a total of $10,000!
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"
How can I sign up to walk? Click "Join this team" to sign up as a walker. You can create your own fundraising goal or simply donate on your own page or the Aria's Army...Jack'd Up team page.
What are the Great Strides Details?
Event: Lehigh Valley 2020
Location: Cedar Crest College (Allentown, PA)
Chapter: Northeastern Pennyslvania Chapter
Check-in: 9:00 AM
Walk: 10:00 AM
Distance: 2 Miles