There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
I was hoping my first pregnancy was going to be everything I hoped it would be. I went into my doctor's office for routine blood tests. I got the call while we were driving to Branson for our honeymoon that I tested positive for a carrier of Cystic Fibrosis and that my husband needed to be tested as soon as possible. Of course that dampened my excitement of our honeymoon. Neither one of us knew what CF was and how it was about to change our lives forever. Once we got home from out honeymoon my husband went to be tested. We found out he was also a carrier. They then referred us to a genetic counselor. We were scared and didn't know what to think. The Genetic counselor told us every horrible thing you could imagine. Your child will die early, they won't live a normal life, they won't be able to play sports or do anything physical. She told us we had a few weeks to decide what to do. (meaning get an abortion) She kept pushing us in that direction. We both didn't want that at all. So we did our own research. We switched doctors and went on with the pregnancy. Our sweet boy was born January 11th 2009. He was 4 weeks early. He seemed healthy and absolutely perfect. We kept him in my room, not in the nursery. They just asked that we kept track of his wet and dirty diapers on a chart. So we did. On day two we asked why he hasn't had a bowel movement yet. They said he has. We told them he hasn't because we've been changing all diapers. He was then rushed to St. Louis Children's hospital where he was in the NICU for meconium ileus. He had to have multiple enemas done to get him to have a bowel movement. They said he more than likely has Cystic Fibrosis. They tried doing a sweat test on him but couldn't get a good reading. He ended up only being in the NICU for a week. We got the call about a week after being home that the results from his newborn screening showed that he does have Cystic Fibrosis. It was a learning curve for sure. We learned so much from his pulmonologist. That he WOULD be able to play sports. And he WOULD live a normal life, but would just have to take medication and do treatments. We were so happy we didn't listen to that genetic counselor. He has been a pretty healthy boy. His weight and height have slowed down within the past three years. Which is currently the only thing we are battling with him. Brendan has started a growth hormone shot this past year and it is really helping him gain weight. He is a very active 11 year old who loves watching and playing hockey. He has also started playing soccer and is really enjoying it!
We decided to have another baby since the chance of having Cystic Fibrosis is a 25% chance. We felt those odds were pretty low. My second pregnancy i had to take progesterone shots so that he didn't come early like his brother did. They were concerned about the echogenic bowel that they saw on the ultrasound. My first had it also and we were told it was a sign of CF but it wasn't a 100% guarantee that he would have CF. He was born 3 weeks early on August 29th 2012. I had severe polyhydramnios. He swallowed a bunch of amniotic fluid and meconium when he came out. He wasn't breathing and they had to pump all of that out of his lungs. He was immediately rushed to St. Louis Children's hospital. He had duodenal atresia which was caused by the polyhydramnios. Part of his small intestine died in utero. He needed surgery when he was two days old to fix it. They cut out the dead part and sewed the two ends back together. He was in the NICU for 6 weeks. It was the longest and worse 6 weeks of our lives. We were told our 2nd baby had Cystic Fibrosis. We thought what have we done to deserve this? In September 2013 he had another surgery. The scar tissue from the first surgery had caused a bowel blockage. It was then my husband told me he didn't want to have any more kids. I was heartbroken. He is hospitalized atleast once a year due to constipation/blockages. Luckily he hasn't needed any more surgeries. knock on wood. He is a very happy 7 year old who enjoys playing outside and being on the go. Jackson has also started playing soccer and he loves it! It really fits well with his on the go lifestyle!
We did have another baby! in 2017 we were blessed with a sweet baby girl! She DOES NOT have Cystic Fibrosis! She loves her brothers so much! and they have been a big help!
Please help so my boys can live long healthy lives and continue to play hockey and play outside!
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
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.