Hi everyone! I'm Shawnee - Harper's mom

Harper will be 3 in July. She was born four weeks early on July 20, 2023, weighing 5 lbs 12 oz and measuring 19 inches long.

From my 20-week anatomy scan on, we knew something wasn't quite right. Every ultrasound showed "echogenic bowels." After genetic testing, both her dad and I found out we are carriers of CF, giving Harper a 25% chance of having cystic fibrosis. We held onto hope - but that hope shifted into reality when she was diagnosed.

Just 12 hours after birth, Harper was taken to the NICU for low blood sugar. Not long after, her belly became distended and firm. She was transferred to Children's Hospital while I was still recovering from my C-section - one of the hardest moments of my life.

There, we learned she had Meconium Ileus - a blockage in her intestines that is often one of the first signs of CF. The surgical team attempted multiple barium enemas to try to clear the obstruction and avoid surgery. After three long days of high radiation and treatments, the blockage finally began to break apart. Harper spent 14 days in the NICU, and during that time we received her official diagnosis: cystic fibrosis.

One of the biggest challenges Harper has faced since birth is her nutritional status. Because CF affects the pancreas, her body doesn't properly absorb fat and nutrients on its own. Despite high-calorie meals, added fats, and careful monitoring, she has struggled with weight gain and was classified in failure-to-thrive ranges early on. Every meal requires enzymes (Creon) just so her body can use the food she eats. We fortify foods, count calories, add extra butter and cream, and celebrate every ounce gained. Growth charts aren't just numbers to us - they're daily reminders of how hard her little body works.

Fast forward to today - Harper has been on Trikafta for six months. Along with Trikafta, she takes Creon with every meal and snack, CF-specific vitamins, famotidine, and uses her inhaler. Her weight gain is still slow but steady, and we continue to fight for every pound. She is growing stronger, more resilient, and more full of life every single day. She has the biggest personality, loves her family fiercely, and absolutely adores horses.

This is our third year participating in Great Strides. Last year Harper had the honor of being a CF Ambassador, and we are so proud to continue raising awareness and funds for a disease that impacts every part of her life.

There is still no cure for cystic fibrosis. CF affects the lungs, pancreas, and other organs, and as people with CF live longer, complications can become more complex and severe. Thanks to the Cystic Fibrosis Foundation, incredible progress has been made - including the development of life-changing medications like Trikafta and over a dozen other treatments. But these are not cures, and not everyone can benefit from them.

We walk because nutrition should not be a battle for a child.
We walk because breathing should not be a struggle.
We walk because every child deserves a future not defined by a disease.

Your support truly makes a difference. By donating to our fundraising goal, you're helping advance research, improve treatments, and move us closer to a cure for everyone living with CF.

Please join us in this fight - and help make CF stand for "Cure Found."