We are raising funds for Matison (11 years old) and Charlotte (9 years old) who suffer everyday with cystic fibrosis. Even though they look like they are fine and just like everyone else, their lives are completely different from a normal child. When both girls wake up, they have to do 3 nebulizer treatments, each lasting 10 minutes long followed by 2 inhalers. While they are doing these treatments, they are also hooked up to The VEST. This is a machine that shakes their lungs to try and break the mucus caught in their lungs up. They do this routine again in the afternoon, usually after school. Then every other month they have to add an additional nebulizer treatment to their routine. Every time the girls eat, they must take 5 enzymes so their bodies can break down the food and hold onto the key nutrients.
When regular treatments are not enough, that means hospital stays or procedures. During Mati's life, she has spent 19 days in the hospital, has had 6 PICC lines inserted so that she did not have to stay in the hospital while she received IV antibiotics, 1 bronchoscope, and a feeding tube placed in her stomach. The feeding tube was placed when she was 5 years old because she had trouble gaining weight because of this disease.
Even though the girls have the same mutation, they have different symptoms. Charlie has spent 34 days in the hospital, has had 5 PICC lines, 5 bronchoscopes, surgery on her trachea, and removal of her adenoids. Then the biggest surgery to date, the removal of the right upper lobe of her lung.
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.