There are approximately 30,000 Americans living with cystic fibrosis and doctors diagnose about 1,000 new cases each year. These people are moms, dads, sisters, brothers, sons, friends, and daughters. Daughters like mine, Caitlyn Tibbets, each who struggle every day just to BREATHE!
Not only just to breathe however, everday they also struggle to gain weight, maintain blood sugar levels (CFRD), have bowel movements, blow their noses to clear their sinuses, and stay away from germs to avoid sickness. Pretty much everday they struggle just to stay alive.
On the outside Caitlyn may appear to be just like any other normal and healthy 4th grade girl. She's into everything from LOL's to X box, Fortnight, fancy fingernails, American dolls, and of course her dogs! She is also very athletic and enjoys spending her time on the gymnastics floor, softball and soccer fields, cheer competitions and theater stage.
All these things come very deserving to a little girl who is well, "not so normal of a little girl on the inside."
On a normal healthy day Caitlyn takes over 25 pills. And many are impressed with her ability to throw like 5 of them in her mouth at a time without liquid and just get them down! :)
She does a little over an hour of breathing treatments both in the morning and night. consuming of 2 inhalers, 2 seperate inhaled liquid medications, and an inhaled antibiotic. Along with her vest machine which delivers her chest compression therapy. Thankfully I no longer have to manually beat her anymore! That is advancement!!
Caitlyn drinks 3 Kids Boost Essentials 1.5 along with 6 scoops of DuoCal, and 2 tubs of Benecalorie each day on top of her regular diet to help maintain her daily high caloric needs. (3000+ calories) I dont know about you...but I can pretty much consume that at breakfast alone lol!
Even with daily maintenance there has still been hospitalizations. So far she has had her tonsils and adenoids removed. She has undergone a G-tube (Mickey Button or feeding tube) placement and removal Yay!, 3 Broncoscopies, a 2 week CF Tune Up they call it...PICC Line placement for 2 weeks because of decreased lung function, a 2 week Clean Out (that was stinky:)), Pneumonia long stay.. and 2 sinus (polyps) surgeries thus far.
CF affects the cells in your body that make mucus, sweat, and digestive fluids. Normally, these are very thin and slippery to keep systems in your body running smoothly. But if you have CF, they become thick and glue-like. This blocks tubes and ducts throughout your body.
Over time, mucus builds up inside your airways. This makes breathing a struggle. The mucus traps germs and leads to infections. It can also cause severe lung damage like cysts (fluid-filled sacs) and fibrosis (scar tissue). That’s how CF got its name.
Real progress has been made for those who have CF, yet there is still no cure for this devastating disease and many lives are cut far too short! We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure.
In 1955, children born with cystic fibrosis often died before reaching elementary school. Today, the predicted median age of survival for people with CF is in the late 30s.
Virtually every approved CF drug available today was made possible because of CF Foundation support.
We are at a pivotal moment in the history of cystic fibrosis and your support matters. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress towards a cure. Please help me reach my fundraising goal!