On June 10th, 2013 we welcomed our beautiful baby girl into this world. It was the happiest moment of our lives!!! Little did we know that everything was going change in so many ways within the next 18 hours.....The day after Adelyn was born we learned that she had an intestinal blockage. She was flown to Children's Hospital in New Orleans that night. We found out when we got to New Orleans that there were two options for what was wrong with Adey. The doctor said that she either had an atresia or Meconium Ileus. We didn't really know much about either condition- only that an atresia would require surgery and Meconium Ileus probably would not. We were hoping for Meconium Ileus (not knowing the link to CF) to avoid surgery. The doctor tried some procedures to clear the blockage for the next three days. On the second day my OBGYN called to check on us and she asked me if Michael or I had a family history of Cystic Fibrosis. I told her not that I knew of and asked her why. She explained that Meconium Ileus was linked to Cystic Fibrosis because the meconium gets stuck due to thick mucus created by CF. This was the first thing we had heard about Cystic Fibrosis. The possibility of CF was terrifying and I didn't want to even think about it unless we were actually looking at that diagnosis. The next morning a new doctor came in Adey's room and asked if we had a family history of CF. Michael and I really began to fear that this might be what was wrong with our baby. Later that day Adelyn's doctor decided that he wanted to go forward with surgery. We spoke with him about our fears of Cystic Fibrosis. He said that he really believed that she had an atresia and not Meconium Ileus. We were so relieved!! A couple of hours later Adelyn went into surgery. The doctor came out of surgery and we could see the outcome all over his face..... She had Meconium Ileus. We were devastated!!! We knew at that point that she most likely had CF. Three days later we got Adey's newborn screens back and they were elevated for CF. A week later we got more test results back that confirmed that Adelyn did have Cystic Fibrosis. We were in shock and terrified about what this meant for our brand new baby! We quickly learned about all of the medical progress that has been made for this disease especially over the past decade. Adelyn is doing great now and fully recovered from her surgery! We are taking many preventative measures to keep her healthy on a daily basis. The CF Foundation has been a great resource for us in the past few years. We have learned so much about this disease and how treatments for it are only getting better every day! Through the foundation we have also met other families with children who have CF. They have been so helpful in so many ways; I can't thank them enough for their support! Each family's experience is unique but we are all fighting the same battle! Please join Team Adey Kate to help raise money for the CF Foundation. We need a cure for our baby and everyone living with Cystic Fibrosis! Thank you!! Allyson and Michael Stulb
It means soooo much to our family that you are here to support Adelyn and others suffering from CF! We have truly seen the difference that the CF Foundation has made this year! Adelyn was able to start a life changing drug (Symdeko) in July. This medication and others like it are getting sooooo close to a cure! BUT we're not there yet! This is why we stride and ask for your help! We still need that CURE!!
Thank you soooo much for your support!!
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. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
Join our team and help us get one step closer to a cure for cystic fibrosis!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows - progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease. We walk in Great Strides for them.
Will you join us?
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.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let's make CF stand for Cure Found!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
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 help minimize the risk of COVID-19, 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.)
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.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
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 are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.