Rory is a year old already! Time has just flown by since the last CF walk, and the discovery of her diagnosis last year.
Her diagnosis was caught on the newborn screening, so we were lucky enough to start treatment as soon as possible. Currently she takes 25-30 pills EVERY DAY. She also takes three other oral medications and two nebulized treatments during a vest treatment that takes half hour each time to complete-done twice a day at least. That's just for a healthy baby with this disease. If she was sick it would be more medications and treatments for her. Which we have definetly had our ups and downs this year. Her weight gain has not been the best so more calories and pediasure every day has been added, as well as scares with low oxygen and several antibiotics.BUT Right now she is a happy and healthy little baby and we would like to do everything possible to keep it that way!
The Cystic Fibrosis Foundation is NOT government funded. Research runs solely off donations. Our goal is to educate and raise awareness for Cystic Fibrosis, and hopefully with it donations to help find a cure. Josh and I, like so many other parents had no idea what it was or that we were even carriers. So many things to learn and information to pass on! Along with raising awareness we would also like to raise donations. New research costs money but it is so worth it! Reading about all the medications and treatments in store for people with cystic fibrosis is awesome. Someday they will all live normal lives and not have to worry about this disease!
Join our team and help add tomorrows! Donations made go straight to the foundation, just in honor of little miss Rory. Follow Raising for Rory on facebook to see how she is doing. Cystic Fibrosis events will also be shared on this page, as well as fundraisers and updates the foundation shares and awesome stories about others living with Cystic Fibrosis!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for them. Will you join us?
By making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. Be sure to follow the facebook page to get updates on the yearly walks! They are so much fun and such a great cause! Very family oriented!
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.