This year will be Team Sun’s 10th Great Strides walk! That means for most, I've shared this fundraiser with you more than a few times... maybe even ten! So, to those friends and family members who have shown up time and time again, even though that year just blasted by and it feels like just yesterday I shared this link, even though money might be tight, or even though life is just non-stop crazy and overwhelming- I want to start by thanking you again for helping change the future of this disease. You're the reason we keep moving forward and we really couldn’t do this without you❤️

     
     When our parents were born, cystic fibrosis was considered a childhood disease, meaning most didn’t make it past elementary age. As the parents of a child with CF, this fact doesn’t escape us. It’s not something we typically speak about or focus on, but watching that number go up year after year is something we quietly celebrate, knowing that it’s all thanks to science and medical advancements that the number climbs. Witnessing the progress in cystic fibrosis care in just our short time of being affected by it gives us hope for even bigger things to come, something even possibly as big as our wildest dreams.

     Everyone with cystic fibrosis has their own unique story to tell. Sun’s first months of life quickly revealed to us how challenging this disease is. He was born with a life-threatening bowel obstruction called meconium ileus. This type of blockage is strongly linked to cystic fibrosis and is very often the first manifestation of the disease. About 1 in 5 babies with CF are born with it. He spent his first week of life in the NICU where he wouldn’t have survived without medical intervention. Suspecting Sun had cystic fibrosis, the doctors started him on pancreatic enzymes- the little beads were mixed with applesauce on the end of a cotton swab before feeding to help him absorb and digest his food.  More than 90 percent of people with cystic fibrosis have pancreatic insufficiency- the tubes in the pancreas that release enzymes become clogged with sticky mucus. Without these supplemental enzymes, they could not survive. Upon discharge from the NICU, we learned that Sun very likely had cystic fibrosis and the newborn screening results confirmed it to be true the following day. Two months later, Sun was admitted to the hospital after an x-ray showed he wasn’t getting any air into the right upper lobe of his lung. Again, mucus was clogging the bronchial tube leading to that lobe. It was suctioned out and daily breathing treatments were increased. Just the beginning of a life with cystic fibrosis.

     Cystic fibrosis is a genetic, progressive, and largely invisible, individual disease, affecting those who have it in different ways and making life much more difficult to navigate. It certainly complicates our every day in multiple ways just trying our best to stay healthy and prevent disease progress. Pills, pills, and more pills, avoiding all sorts of risky situations (not only the obvious respiratory germs, but dust, smoke, mold/mildew, and harmful bacteria in the soil and water keep us on constant alert), time consuming breathing treatments to factor into our daily morning and evening routines (double when sick with a cough), a focus on extra salt, fat, and fat-soluble vitamins in the diet (because those with CF lose lots more salt in their sweat and extra fat is needed to account for malabsorption and also help with the absorption of certain medications), extra doctors appointments with a specialized care team- Sun has to do a lot to stay healthy and avoid a lot at the same time. He's hopped from one CFTR modulator drug to the next since he turned two and is now on the newest one approved. We are not only hearing and reading about science evolving, Sun is living through changes and improvements in medicine thanks to groundbreaking research. Unfortunately, not everyone with CF benefits from the same drugs and while some mutations don't respond to the current modulators, others just simply can't tolerate their side effects. The Drug Development Pipeline outlines CF drugs currently in development or already in use by patients- a promising look at what's been accomplished so far along with what is currently being worked on. 

     The Cystic Fibrosis Foundation was started by a group of parents in 1955. There were no treatments for the disease at the time. The Foundation is now the world's leader in the search for a cure for cystic fibrosis and funds more CF research than any other organization. Nearly every CF drug available today was made possible because of Foundation support.

If you have a little time and would like to read more about cystic fibrosis:
About Cystic Fibrosis