Harper's warriors

Our Great Strides Story

Hi everyone! I’m Shawnee aka Harpers mom. Harper was born 4 weeks early on 7/20/23 weighing 5 lbs 12 oz and 19 inches long. 

We knew from her 20 week anatomy scan that something was wrong. Every scan showed “echogenic bowels” her dad and I both tested positive for being CF carriers. Knowing she had a 25% chance of having it. We were still hopeful that wasn’t the case. But it was. 12 hours after birth our baby girl was taken to the NICU for low glucose. Shortly after she started having a distended stomach. The decision to send her to Childrens Hospital was made. This was a difficult decision since I was still recovering from my c-section and wasn’t set to be discharge for another day. 

We found she had a blockage diagnosed as Meconium Ileus. But the surgical team decided to try barium enemas instead of surgery. After 3 days after barium and high radiation the blockage started breaking up.  She spent 14 long days in the NICU. During that time she got the diagnosis of Cystic Fibrosis. As scared as we were of the diagnosis, it also was relief knowing we could start treatment sooner rather than later. 

Fast forward to today. She is 8 months old. 17 lbs. gaining weight has been a struggle, but she is always going up. She takes daily medications and chest pt. It’s been a learning game for all involved. Her monthly check ups have became less scary. The strangers who gave us the diagnosis have become family. 

Our hope is to have her grow up with as normal of a life as she can. To not let this diagnosis define who she is. She is our warrior and shows us how strong she is every day. 

Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues. 

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

By donating to my fundraising goal, you will help advance a mission that means everything to me and my family- a cure for cystic fibrosis.  Please consider joining us and helping make CF stand for Cure Found.

We walk for a cure for all people with cystic fibrosis. By joining our team, you can help us end this disease!

To become a team member, click the “join this team” button. Once you register, it’s easy to donate and start fundraising.

Our team is determined to ensure that every person with CF can live a long, healthy life, without the limitations caused by their disease. We can’t wait for you to join us.