When Maya was born, the average life expectancy of a person with CF was 27 years. Breakthrough treatments have added years to the lives of people with cystic fibrosis. Today, the median survival age has increased to 47, but that is hardly enough!
In November of 2019, Maya started on the new triple drug combo called Trikafta, made by Vertex Pharmaceuticals with research supported by the CF Foundation. This is the drug that we have been so excited about, the one we have been waiting for, and it has not disappointed us! Maya has little to no cough, has gained weight, and is generally feeling better as far as CF symptoms go. She has not been on IV antibiotics for CF bugs since almost a year now! That is pretty amazing progress!!
Maya did have her share of challenges this past year too. She had surgery for kidney stones, had uncontrollable back pain and was not explained until an MRI found a sacral fracture. A couple of spinal blocks later, the fracture was healed, but the pain returned. So far, Maya has endured almost a year of pain and multiple hospitalizations, but no doctor could seem to explain nor fix the source of the pain. Once we found a doctor who identified a problem and a second doctor confirmed it, insurance refused to cover the procedure required to fix it! We don't think this is related to CF, but we don't know for sure.
While we have found a drug that helps ease the symptoms for 90% of people with CF, there are those 10% out there for whom we need to continue the fight. In addition, the drugs we do have are daily pills, none of them are a cure. So we need continue our efforts to raise money for the CF Foundation and the life-saving research it funds. You can help by making a donation of $25, $50, $100, or whatever you can afford. Donating online is quick and easy; just click on the DONATE button. Every dollar does make a difference. YOU make a difference and we will remain eternally grateful for your support!
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.