It's estimated that about one in thirty people carry a CF-causing mutation. Unaware, Justin and I were both that one in thirty. Our chance of having a child with cystic fibrosis was one in four. Meet Sun.
Cystic fibrosis leads to the buildup of thick mucus in various organs, including the lungs, intestines, pancreas, and liver as well as causing sweat to be excessively salty. The underlying cause is a defect in the CFTR protein, a channel that regulates the movement of salt and water through the membranes of cells. It is very much an invisible illness. You can't see that thick, sticky mucous wreaking havoc from the outside. Before Sun, Justin and I had never knowingly met another human being with it. It's hard to look at this rambunctious five year old and think he would need so many interventions to be as healthy as he is, but it's true. He needs enzymes with every snack/meal to digest fats/proteins/carbohydrates, multiple daily breathing treatments involving inhaled medications to help clear the airways, extra fat-soluble vitamins, extra salt, a CFTR modulator (a new class of medications designed to improve the function of that defective CFTR protein) taken every 12 hours with fat containing food, a diet high in calories/fats/proteins to compensate for poor digestion and help fight lung infections, and more. Frequent doctor's appointments are also necessary to keep an eye out for lung infections, proper weight gain, and routine blood work to monitor lab results. If this sounds like a lot, it's because it is, and this is very likely as easy as it gets. CF is a progressive, lifelong illness that is difficult to manage- A day by day journey. Life expectancies have been climbing due to all of the things I just mentioned, but it's still not exactly dreams gone wild.
When the Cystic Fibrosis Foundation announced its Path to a Cure initiative, promoting the development of new treatments tackling the underlying causes of CF, with the final goal of finding a cure for the disease- THIS. This is dreams gone wild, and it makes us feel an intense excitement for what the future could look like for everyone fighting this disease. Justin and I hear the whispers of cystic fibrosis in our brains non-stop. It's changed our lives in just about every way. We are thankful to live in the present, with all of the hard work that's been done by those before us- those who had the vision to believe that progress was even possible. Together, we can write the next chapter of cystic fibrosis. Research is the path to a cure and your donation really can make a difference!
Thank you everybody!!! Forever grateful, The Dick's
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.