My name is Katelyn, and I have Cystic Fibrosis. Here is a day in my life:
I wake up at 5:45 AM to begin my breathing treatments by 6 AM, which consists of 3-4 medications in 30 minutes. I wear a shake vest that shakes my whole body. Sometimes I cough so much I gag, but my mom or dad and my brother will sit with me. We watch TV or read books. I love Disney Movies!
Then it is time for breakfast, but before I eat, I have to take medication to help me digest my food (about 22 pills a day). It's no biggy I have been doing it forever. I even swallow six at a time.
When I am done eating I have to have a 1/4 teaspoon of salt with powerful vitamins, probiotics, elderberry, and vitamin D. (thankfully I LOVE salt!) My brothers are sooo jealous, they want salt, and they get mad when mom doesn't let them have some, even though she does give in sometimes. Jackson gets so excited.
After that, I get my Kalydeco, which is my miracle drug. It is the reason why my tummy doesn't hurt as much, and it is the reason I don't get as sick as other kids with Cystic Fibrosis. Cystic Fibrosis Foundation has helped me with this medication, and it is why this walk is so important to me. I call it, "My walk." Although I am shy on the day of the walk, I talk about all of my friends for weeks afterward.
Then I take special vitamins that are about 10X more potent than my brothers.
When Mom takes to long to get my medication, I have to remind her.
Then I get to go to school (I love to learn), and when I am sick or have a cough, I have to do breathing treatments at school, but I don't mind. I have the best school ever. They take excellent care of me and let me color, watch movies, or play games. When I eat at school I have to take my pills, my teacher never forgets, she is the best. (They call me a mother hen, but we know that that means bossy.)
When Mommy picks me up, we come home and do another 30 min — breathing treatment with my shake vest and four inhalation medications.
Then I get to play while mommy cooks. (If I am sick, I will have to do another 30-minute breathing treatment before bed.
I then take all the same medications as I did in the morning.
Finally, I get to go to bed.
When I got on Kalydeco, my parents finally took me out of the house. I love the world, but of course, I ended up getting really sick with three viruses and two bacterias in my lungs. I spent five days in the hospital. This was really hard because they poked me and prodded me, but every doctor that listened to my lungs said it is amazing how clear my lungs sound considering how sick I was (thank you Kalydeco and Cystic Fibrosis Foundation). After I got back to normal a few months later, it happened again. I was in the hospital, I try so hard to stay strong, but it is really scary, and I have to be really brave. My mommy tells me it is okay to cry, but I try not too.
On Valentine's Day 2020, I was admitted for my third time. My lungs have been struggling for a while, and I have tried to stay strong, but the doctors want to help me. We will see how it goes.
This is my life, and this will be my life (except with longer treatments as I get older) unless a cure is found. I know, it seems like an impossible task, but together we can work towards this massive goal. Remember, just seven years ago, Kalydeco didn't exist, and that drug has already added years to so many people with CF. Now they have Tricafta (which I cannot take because I don't have the right mutation), but there are so many more children/adults that can't take that medication, and we need to fight for them, too.
Please walk alongside me and support me!
I love you, and thank you for all your prayers; I am strong because of the support I get!