Join our team and help add tomorrows for Caleb and all other with Cystic Fibrosis!
When Caleb was first diganosed he was just 6 weeks old. He has been so tough and has had to do things normal kids or adults will never have to experience. When he gets a cold is lasts for weeks not days. But thanks to all the fundraisers and people who help and support everything this is becoming something that can be maintained and controled. With in the last year Caleb was so lucky to be chossen to take the new drug Kayledco to help keep his lung functions where they are so that he can remian healthy with his lungs. This has been a great experience to know that he lung functions can be controled by a drug that would not have been possible without the help of all the donations and time put into this.
Every morning when Caleb wakes up he has his simple routine that some people dont even think about as a "simple" routine. He first wakes up with a mighty cough as if he has a cold and something is simply stuck in his throat, then he can begin the normaly part of waking up, but then we have to get him something to eat for breakfast but before he gets to just hop into his seat and enjoy his breakfast he has to take 6 small pills (enzymes) just so he can maintain the nutrients in the food, and then he also gets a dose of his Kayledco so that can help keep his lungs clear. Then he can finally enjoy his breakfast. But again like many things in his life thats his routine along with every meal and snack. So even when he just wants a quick snack it can not be quick at all, he again has to take 1/2 his dosage so that he can keep the nutirents of the food. However you will never here Caleb complain or throw a fit because that is his routine and he is ok with that. We never make him feel as if it is a burden so he doesnt either.
Now when Caleb gets ill that can be a scary situation. Because things are never as simple with a child with CF. His common cold can turn at any moment and become something very scary. Christmas day in 2014 was a very scary day. Caleb wasnt feeling well, but of course didnt show it at all, and he was running a fever and had a seizure. This was one scary moment for us as parents, i have never delt with anything like this and 2 minutes seemed like an enternaty. But when we called the ambulance and went to the hospital everything worked out and he was healthy and stable, just a really scary moment that as a parent you never wnat to ahppen agian. That is why I stay proactive and make sure when he has a simple cough that I begin what i call the "sickness kicker plan". This begins with doubling up on his daily treatments. Everyday he noramally does about 1 nebulizer treatment to clear his pathways in his lungs and get him unconjested. Then we do the shaker vest, to make sure the phlem is up and out, atleast twice a day. We also talk to the doctors his normal peditrican and our CF clinic to make sure everyone is on the same page just in case something gets worse or something scary happens.
But at the end of the day we love how tough and fun loving Caleb is even on his bad days, This kid is the bravest person you will ever meet with the best smile that anyone could offer. Caleb will make your day better even if his is not. That is why we need your help to keep the hope alive to make CF stand for Cure Found so other children and adults can live a noraml life and not have to face tough days that normal people couldnt even handle.
Please join our team in the effort to stand up and fight with Caleb to end Cystic Fibrosis.
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.