My number one little guy is one of 30,000 Americans and 70,000 people worldwide living with cystic fibrosis (CF) – an incurable, life-shortening, genetic condition.
We found out Zane would have CF when I was 16 weeks pregnant. The Dr. told us that many people choose to terminate their pregnancy with this diagnosis. We were so excited to be pregnant and thought that we were going to lose our baby. After the immediate devastation started to fade, we started doing research. One of the places we called was our local CFF chapter. The Director got on the phone with us immediately and answered all of our questions, shared her hope for the future of people with CF, and connected me with another CF Mama in town. It was my conversation with this Mama that really started to change my thinking on our situation.
Almost a year ago, Zane had his annual chest x-rays and they were not as pristine as the year before. On one hand, I was dying inside that his "normal" childhood won't be as carefree as other children, and on the other hand I am super thankful for the 19 months of treatments and drugs that have been available to him since birth.
Having a kiddo with CF has affected every relationship and interaction in our lives. “Is anyone in your house sick? Sorry, we can’t come play.” “Do you keep up with vaccinations? Sorry, that’s a deal breaker for us.” “Come see your family? Sure, as soon as everyone has gotten their flu shots.” As a Mama, it is hard enough to do what’s best for your children, it’s even more difficult when you live in fear of them catching bug that is going to hospitalize them.
Zane is just getting over a cold. That may not be a big deal to most people, but for him it is very important that the mucous from the common cold doesn’t settle into his chest. To keep this from happening, he had to do four 30-minute sessions of his vest and inhaler. He also had to do inhaled hypertonic saline to help him cough mucous up. On top of that, he has to eat, sleep, take super vitamins and allergy medication. Let’s not even mention time to play and be a kid. To accomplish all this, we have an hour-by-hour schedule for each day. Caring for someone with CF is a full time job!
Fast forward 3 years and the average age for people, born with CF today, has increased from 35 to 47!!! This is 100% from new drugs, therapies and treatments which wouldn't be possible without the support of the CF Foundation.
Thank you so much for your support. We can't wait to walk with you in May!
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.