What is Cystic Fibrosis?
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In the lungs, mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. The disease can also affect the pancreas and other organs. When a group of parents started the Cystic Fibrosis Foundation in 1955, there were no treatments for cystic fibrosis. Children rarely lived past kindergarten. Thanks to the dedication of this foundation, people with CF are reaching adulthood and milestones previously unheard of.
However, there is still no cure for cystic fibrosis.
Eira is an incredibly happy 20 month old whose personality continues to show more and more every day. Whether it is chasing us down to read her favorite books for the 1000th time or trying to give our dog a face hug. The only things she does not enjoy are her twice daily breathing treatments and green vegetables.
On June 9, 2018, we welcomed Eira Grace McSorley to our family, but the experience was not at all what we expected. At 34 weeks of pregnancy, we learned that what had started as a minor bowel dilation was growing in size and Aubrey was immediately admitted to labor and delivery.
At 1 day of age, Eira underwent successful surgery to remove an intestinal obstruction caused by meconium ileus, the earliest presentation of cystic fibrosis in some infants. She had a temporary ostomy placed until she was big enough to have everything reconnected. Shout out to Dr. Jack Schneider for his amazing work!
On day 5, our worst fears were realized when Eira's newborn screening confirmed that she was positive for cystic fibrosis.
For the next 79 days, we commuted to and from Helen Devos to spend as much time with Eira as possible - a schedule that was quite stressful and tiring at times. We met with surgeons, dieticians, pulmonologists, respiratory therapists, etc, regularly and learned as much as we possibly could about the illness and her treatment. During her stay we always looked forward to her weekly weigh in. We became obsessed with tracking her weight gain!
After a successful second surgery and recovery period, we were given the green light to go home! It almost seemed too good to be true.
Fast forward a year since she's been home, Eira has blossomed into this amazing little person, full of spunk and tenacity. We feel so grateful for the doctors and nurses who literally saved our little girl and made it possible for her to come home. Moreover, if it were not for the Cystic Fibrosis Foundation, we would not have the hope we have today for her bright future. The medications and therapies available today are the direct result of their research. We believe there WILL be a cure for CF someday.
So 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.
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!