Aria was diagnosed with Cystic Fibrosis often referred to as CF during her newborn screen! Now Aria is four years old and getting bigger, striving to keep her healthy. Cystic Fibrosis is a chronic genetic illness that affects many parts of the body. A defective protein caused by a mutation in Aria's genes interrupts the flow of salt in and out of the cells, causing mucus that's naturally present in healthy people to become dehydrated, thick, and causes other problems with respiratory, digestive, and endocrine systems. In the lungs, the mucus creates a welcoming environment for bacteria to expand causing illness faster than most which leads to more lethal bacteria to grow because clearing out the thick sticky mucus is hard and it can be draining on the body. Infections inflammation and scarring can lead to respiratory failure. CF is a progressive disease which means it gets worse over time. One thing about CF is that it's a disease that attacks on the inside. Aria may look ok to most, and this is the frustrating part because people often perceive that nothing serious is goin on. CF gives Aria the chance to look like any other healthy kid on playground. However, what people don't see is the pills she has to take before eating due to the affects of CF on her pancreas. She does breathing treatments and chest therapies to clear mucus, wearing a special vest that is set for her 30 minutes 3 times a day and more when she is ill.
Keeping her weight up is important too! Extra calories and extra salt is apart of her daily routine. We couldn't do it alone. We have a great care team at Riley Hospital where we go to CF Clinic Care monthly. An amazing team of doctors, physical therapist, pharmacists, school and social service support, and dietary support. We have had our moments of extended stays in the hospital for what is often referred to as a tune up. As a family we want to encouraged Aria to dream big and we strive to gain awareness and support for Aria and all those living with this disease. With the support of our CF Clinic, the CF Foundation, friends, and family we are hopeful that one day CF stands for Cure Found!
By donating to my Great Strides fundraising campaign your gift will support groundbreaking research, medical progress, and hopefully one day a cure! We will be walking and hopefully each step we take is a step towards a cure. In addition to this, your gift is 100-percent tax deductible.
Become apart of our Aria's All-Star Team! Thanks in advance for your support! By becoming a member and or making a donation, you are joining a growing group of people committed to finding a cure for Cystic Fibrosis. Together, we are adding tomorrows to the lives of people living with CF
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.