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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.