Shortly after Cara was born, we found out she had cystic fibrosis. Although we heard of cystic fibrosis, we did not know much about it. In sum, it is a genetic disorder in which the body produces thicker mucus in the pancreas and lungs. The thicker mucus makes absorbing nutrients from food more difficult. Cara has to take enzymes before every meal along with a daily multi-vitamin to aid absorption. She also has to be on a higher calorie and fat diet to ensure she sufficiently gains weight.
Cara receives daily albuterol and pulmozyme treatments through a nebulizer, and we perform chest physical therapy twice a day to help keep her airways cleared. It is also extra important for her to avoid getting sick. If a person with cystic fibrosis gets sick, the mucus traps the bacteria and allows it to multiply, which can cause infections and lung damage.
There currently is no cure for cystic fibrosis. In the 1960s the average life span used to be about 10 years old. Through medical research, the median life span is now in the 40s. With your donations, the Cystic Fibrosis Foundation can increase the life span and hopefully find a cure. We would love your support to help find a cure. Below are the ways you can help.
1. If you are able to join, please participate in the virtual walk June 5.
2. You can make a donation. These donations help fund research and ways to look for a cure.
3. If you are able, please consider registering as an organ donor. Later in life, cystic fibrosis patients’ conditions can worsen and require a lung transplant. Some of them die waiting for a transplant, so please consider being an organ donor if you are not already.
Thank you for reading about Cara’s story and your support for finding a cure for Cystic Fibrosis.
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.