Here is a letter from my daughter she is my hero. She does more than any child should have to do and she has such a fighter spirit! I love this girl!
My name is Katelyn and I have Cystic Fibrosis. Here is a day in my life:
I wake up at 6:00 AM to begin my breathing treatments, which consists of 3 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 with reflux because I silently aspirate on it and it damages my lungs.
Finally, I get to eat and while I am eating I take 3-5 pills to help me digest my food. It's no biggy I have been doing it forever.
When I am done eating I have to have a 1/4 teaspoon of salt with vitamin D. (thankfully I LOVE salt!) My brother is sooo jealous, he wants salt and gets mad when mom won't let him have.
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.
Then I take special vitamins that are about 10X more potent than my brothers.
Then I take GasX to help my tummy feel better.
When mommy takes to long to get my medication, I have to remind her. (silly mommy)
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. When I eat at school I have to take my pills and sometimes my teachers forget, but don't worry, I remind them 100 times until they give it to me. (They call me a mother hen, but we really 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 4 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 3 viruses and 2 bacterias in my lungs. I spent 5 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.
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 6 years ago Kalydeco didn't exist and that drug has already added years to so many people with CF; but there are so many more children/adults that can't take that medication and we need to fight for them, too.
Please walk along side me and support me!
I love you and thank you for all your prayers, I am strong because of the support I get!