My Great Strides Story

Hi everyone! I'm Shawnee, aka Harper's mom. Harper was born four weeks early on July 20, 2023, weighing 5 lbs 12 oz and measuring 19 inches long.

From her 20-week anatomy scan, we knew something wasn't quite right. Every scan showed "echogenic bowels." Both her dad and I tested positive as CF carriers, meaning she had a 25% chance of inheriting cystic fibrosis (CF). We remained hopeful that she wouldn't have it, but unfortunately, she did.

Just 12 hours after birth, our little girl was taken to the NICU for low glucose. Soon after, she developed a distended stomach. The decision was made to transfer her to Children's Hospital. This was a tough choice since I was still recovering from my c-section and wasn't due to be discharged for another day.

At the hospital, we learned that she had a blockage in her intestines, diagnosed as Meconium Ileus. The surgical team decided to try barium enemas instead of surgery. After three days of high radiation and barium treatments, the blockage began to break up. Harper spent 14 long days in the NICU, during which we also received the diagnosis of cystic fibrosis. While we were scared, it was also a relief to know that we could start her treatment sooner rather than later.

Fast forward to today-Harper is 18 months old and weighs 20 lbs. Gaining weight has been a challenge, but she's always on the upswing. She takes daily medications and undergoes chest physiotherapy. It's been a learning process for everyone involved. Her monthly check-ups are becoming less scary, and the doctors and nurses who once felt like strangers have become family.

Our goal is to help Harper grow up with as normal a life as possible, never letting her diagnosis define who she is. She's our warrior, and she shows us her strength every single day.

Currently, there is no cure for cystic fibrosis. But by participating in Great Strides, I'm helping to bring us one step closer to ending this disease for the thousands of people affected by CF.

Cystic fibrosis impacts the lungs, pancreas, and other organs. Its symptoms can vary greatly between individuals, and as people with CF live longer, the disease often becomes more complicated, leading to severe health issues.

The Cystic Fibrosis Foundation has made remarkable progress, including the development of over a dozen CF treatments. However, these treatments are not a cure, and not everyone benefits from them. We have to keep pushing forward.

Your support makes a difference.

By donating to my fundraising goal, you're helping to advance the mission for a cure for all. Please consider joining us in this fight and helping make CF stand for "Cure Found."