Riley's story has certainly not been a simple one. At exactly one week old we received a call that her newborn screen was abnormal and she needed additional testing to determine if she had CF. We were absolutely blindsided by this and had no clue what to expect.
Since then, Riley has undergone countless doctor appointments, medical tests, blood draws, medications, x-rays, etc. All of this has left us nearly as in the dark as we were initially. Riley carries the most common CF mutation, d508, as well as mutations of "unknown significance." Her sweat chloride tests have all fallen in the intermediate range, so no true diagnosis of CF can be given.
Despite that, Riley struggles daily with illness, pain / discomfort, medications, etc. Although she doesn't have a true CF diagnosis, she is more than just a carrier of CF and it complicates her every day life.
Whether her diagnosis remains as CRMS or changes to CF, we stand behind the fight for a cure!
Please Join Us
Help us support the fight for a cure for CF - for Riley and every other person impacted by this life altering disease.
Riley's roar is strong, but with your support it is even stronger.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.