Our Great Strides Story

Parker is an active kiddo fighting everyday to beat the odds of Cystic Fibrosis! He loves being outdoors riding his bike, playing at the beach or swimming! He loves fishing, ice hockey and anything to do with trucks and cars. Parker absolutely loves going to Disneyland! You can find him at Disneyland always on the hunt for Pluto and ready to ride anything fast!

He was born April 29, 2020 and at three days old was rushed into emergency surgery for Meconium Ileus or MI for short which he received an ileostomy bag. He fought for his life in the NICU for weeks getting stronger each day proving from the start he would not let CF stop him. 

Then June 26, 2020 he had his reversal surgery and spent some time in the PICU for his recovery.

Parker has had a total of 9 hospital admissions since he was born and multiple surgeries. He has endless doctor’s appointments to help keep him as healthy as possible. 

Many people think Cystic Fibrosis has to only do with the lungs. Unfortunately CF can affect the whole body.

Parker’s CF not only causes him lung issues but he also has GI issues, an insufficient pancreas, CF kidney issues and more eventually will happen as he grows. 

He takes a long list of medication each day, to help his little body fight hard! Plus multiple breathing treatments and chest therapy daily. 

In 2023 Parker started Trikafta. Unfortunately we didn’t have a positive experience with Trikafta and Parker was pulled off in April of 2024. 

This is another reason why we must continue to fight for everyone with CF! 

Trikafta isn’t a simple medication. First off it’s only available to people with CF that have certain mutations. Even the people that qualify for it don’t always end up having a positive experience. We are thankful Parker was able to try and and hopeful that a better medication will come out in the future for Parker and all fighters!

If you want to know what it’s like for someone with CF to breathe, take a straw and try breathing through it while plugging your nose. 

The ocean has been proven to be a wonderful natural medicine for people with Cystic Fibrosis! With CF the “salt channels” don’t work properly. People with CF have sticky mucus. Imagine stepping on gum! That’s kind of how the mucus is with someone with Cystic Fibrosis

We are thankful Parker absolutely loves the beach! Any chance we have we try and get him on the beach and in the ocean to get that mucus flowing! 

Fighting for Cystic Fibrosis has become a passion for us. We never want Parker to feel like something is wrong with him or that he needs to be fixed. Parker is perfect just the way he is!

While of course CF has its challenges, we believe God has chosen us to be Parker’s parents for a reason! He knew we would fight to the ends of the earth to give Parker the best life possible and tackle every challenge along the way! Being his parents is such a blessing and we would love for you to help us join our fight against Cystic Fibrosis! 

Please consider joining our Salty Fry’s Crew Team to walk with us and consider making a tax deductible donation to help Cystic Fibrosis.