The photo I have chosen for this page is graphic, raw & not for the faint of heart. Most of you have followed my niece Paige’s journey with Cystic Fibrosis for years now and some of you are just beginning the journey with us. Most of the pictures we’ve shown are ones where she’s smiling with thumbs up letting everyone know that she’s okay, pretty masks, new vests and smiles. No one see’s the reality of what this horrible disease can do to the body unless they live it. It’s sometimes difficult for those with CF because it’s a very deceptive disease. People see them from the outside and they “look” healthy…but no one can see that it’s actually ravishing their insides. People oftentimes don’t realize how sick that they really are and expect a lot more from them than they can actually do and that can be really frustrating for them. That being said, this year has ranged from the most terrifying times to the most joyous and hopeful ones. I remember this particular day in May like it was yesterday. Paige had gone in for what was considered a fairly easy procedure. They were going to go in and scrape her lungs but it was so impacted that her lungs started filling up with blood and she was unable to breath on her own. I was at work when I got the call from my brother….she was on life support. In this particular photo, I had just walked into that ICU room and saw Paige on life support for the very first time in her life, blood in the tubing that was coming from her lungs. This had to be one of the most traumatizing moments in my life. I have worked in the medical field for years and had seen just about anything you can think of…none of that could prepare me for seeing my beautiful, fun-loving, caring, smart, precious niece laying there like that. It both terrified and shattered my heart and I never want to have to go through that with her again. That’s why I keep asking everyone to help support us in finding a cure for Cystic Fibrosis.
Paige has started an experimental treatment called Phage Therapy. Before Phage Therapy, she had completely ran out of options. The infection in her lungs had become totally antibiotic resistant. When they sent her home from the hospital it wasn't because she was getting better. It was because there was nothing else they could do for her. Since starting Phage Therapy she's had more energy than she's had in years and we are so thankful and hopeful that #PaigesPhages will continue to help her be able to live a longer, more productive life. If you'd like to read more about Phage Therapy I'm going to drop a link below.
All of this being said, the median age of survival for those with Cystic Fibrosis is 37 years of age. Some will live beyond that but many will succumb before that. We NEED to do better!!!! I love Paige so much and it’s SO important to us as a family that a cure be found. Thank you from my heart for all of those who have so generously donated and have continued to be such a support through the years. PLEASE help us if you are able…we will never forget and will always be grateful and thankful in our hearts for you.
Additional information about Paige's journey with Phage Therapy in the link below: #PaigesPhages: (this is also the subject of a new episode of the Netflix docuseries Follow This)
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.