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!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.