This marks our 4th year raising money for our Great Strides team in hopes of finding a cure for our daughter’s disease. Some of you know, Jaxyn was diagnosed with cystic fibrosis (cf) at 8 days old through the newborn screen test given at the hospital. Cystic fibrosis is a devastating disease that impacts multiple organs in the body, with the greatest effect seen in the lungs and digestive system.
Besides her struggles to gain weight due to her pancreatic insufficiency, Jaxyn has been a healthy kid. However, this past month she has cultured a bacterial infection in her lungs. Chronic lung infections are the cause of lung decline and eventually lung failure in CF patients.
We have a lot of hope for Jaxyn’s future as new treatments funded by the Cystic Fibrosis Foundation are hitting the market that can change the trajectory of her disease and hopefully provide her a longer life. Not everyone in the CF community can tolerate, afford, or are eligible for these novel treatments and they are still far from a cure. Until then, we keep fighting for Jaxyn and all those impacted by this deadly disease.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.