Many of you know the difficult journey we had with our pregnancy and all the unknowns. Knowing there was something wrong with our sweet baby, but not knowing exactly was pretty stressful. We became regulars at the Fetal Health Center at Children's Mercy and even started to pick out things ourselves on the weekly ultrasounds! We knew we would fight for our sweet little girl no matter what and when Collins Marie was born on April 5, 2018, our sweet little 5lb 13oz nugget forever captured our hearts. She did spend some time in the NICU at Children's Mercy and it wasn't until a couple weeks after we had her home that we got her newborn screening tests back and all the sudden all those fears during our pregancy came rushing back. We had to wait a couple more weeks before we could do the sweat test to diagnose their suspicions because our little girl was just too tiny to perform the test.
On May 8, 2018 we sat down with the doctors in the Cystic Fibrosis Clinic at Children's Mercy to find out the life changing news that our precious Collins had Cystic Fibrosis. David and I had been through many of these types of appointments over the course of our pregnancy journey and went through the emotions of thinking our baby might have spina bifida, downs syndrome, intestinal blockage, among many other things doctors discussed with us, but nothing could prepare us for that news. We both cried as we sat there with the doctor, holding Collins, not knowing what all this would entail. The doctor assured us of all the amazing strides and research that was going on to find a cure for Cystic Fibrosis, but we didn't hear very much that day after the diagnosis. None the less, we were taught that day how to start her enzymes that she would need with every bottle and feeding, giving her daily vitamins, and later we learned her daily nebulizer treatments and chest therapy.
Collins is now coming into her 2nd year and her personality is really shining through! She has had many milestones in her CF journey including getting her first vest around Christmas. It was with mixed emotions that we welcomed this milestone. As much as we hate that she has to do it every day and live with this disease, it is our reality and we are so thankful that she actually enjoys the vest. Baby Shark is on repeat in our house during her daily treatments and big brother, Cannon, is quite the helper.
We are still in the beginning stages of her disease, but we are hopeful that all the research those amazing doctors are doing for CF will secure Collins a long life ahead. The big strides this year with the new Trikafta drug has us as hopeful as ever that we are on the cusp of possibly finding a cure. We look forward to the day that our little girl and all others living with this disease don't have to worry about the unknown. For now, we will fight every day, do every treatment possible, to keep her as healthy as possible and we hope you will partner with us for our second Great Strides walk in honor of Collins Marie Boger. Our team Cruisin' for Collins would love your support in any way!
Join our team and help add tomorrows!
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? To become a member of our team, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. We will not rest until all those with cystic fibrosis have a cure. The time is now. Together, we can conquer this disease.
We came across a really moving quote from someone in the CF community in the last year: "Life is not measured by the breaths we take, but by the moments that take our breath away." Collins takes our breath away each and every day and we hope you will join us in her fight!
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF -- join our team today!
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.