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 4th year and she sure is a spunky toddler! She has had many milestones in her CF journey including her most recent 2 week hospital stay in January. It was definitely a hard couple weeks but our little girl perservered. We are so thankful of all the support that circled around us. Collins now knows how to put her own vest on and push the buttons to get her started. Some days are better than others with her treatments, but for the most part she does well. Outside of her CF regime she is a normal toddler enjoying playing dress up in all her princess outfits, dancing and singing, and following big brother Cannon! She also has moved into a big girl bed and we are so proud!
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. Trikafta, the new drug, has us as hopeful as ever that we are on the cusp of possibly finding a cure. Collins is within reach of getting to take it and hopefully will have access in the next year. 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 fourth Great Strides walk in honor of Collins Marie Boger. Our team Cruisin' for Collins would love your support in any way!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. We walk for them. Will you join us and support our fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. We will not stop striding until all those with cystic fibrosis have a cure. Will you join us? Please consider donating to our Great Strides fundraising campaign today!
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!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress towards a cure. This last year has been challenging for all of us and we look ahead to what 2022 has in store for all of us! Please help us reach our fundraising goal!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.