We did not know what the newborn screen was, but that little heel prick changed our lives forever.
The evening we received the call from our pediatrician to tell us that our newborn son's screen results were abnormal was a blur. Cystic Fibrosis? My husband and I had looked into the disease a few years prior, but "that couldn't happen to us". How could our perfect little boy have this disease? So many questions. So many tears.
Cystic Fibrosis is a life shortening, genetic disease that affects the lungs and digestive system of more than 30,000 Americans. Those with the disease have a defective gene in which the body produces extra thick, sticky mucus that clogs the lungs, pancreas, GI tract, and liver. The mucus is an excellent breeding ground for bacteria that will hole-up in the lungs which can lead to life-threatening infections. It also blocks the pancreas from releasing natural enzymes which prevents nutrients being absorbed from the food they eat. Also builds up in the GI tract which can lead to complications with constipation.
To help prevent this from happening, Dylan is on a strict schedule of treatments and medicines to help break-up and loosen the mucus -- these preventative measures are in place to help reduce the likelihood of the bacteria growing and making him sick.
A normal, "healthy"*** day for Dylan:
• Digestive Enzymes before ingesting anything with fat and/or protein (Creon 6,000 [digestive enzymes to help his body break down and absorb nutrients])
• 1 nebulized bronchodilator (Atrovent [helps open the airways]), 2x a day
• At least 30 minutes of Chest Therapy (Respirtech InCourage vest [helps move the thick mucus up and out]), 2x a day
• 1 nebulized mucolytic (Pulmozyme [breaks up and dissolves the thick mucus) 1x a day, evening
• 1 inhaled corticosteroid (Flovent [reduces inflammation in the lungs]), 2x a day
***Please keep in mind, when he is sick, these treatments go up to 4x a day!
This is just the tip of the iceberg those with Cystic Fibrosis deal with. Dylan's young, his lungs are still basically brand new. We are blessed for how overall healthy he has been.
Even with all of the hard work this little dude (and ALL with Cystic Fibrosis) does every. single. day. 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. I will not stop striding until all those with Cystic Fibrosis have a cure. Will you join us?
Let's Stride so that someday CF will stand for Cure Found!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.