Salty Fry's Crew

Join us Saturday May 11, 2024 at 8:30am in Huntington Beach on the South side of the pier down where Beach BLVD and the coast Highway meet! The event takes place on the beach side across the street from the Hyatt.

Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!

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 ice skating and anything to do with trucks and cars.

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 8 hospital admissions since he was born and multiple surgeries. He has endless doctor’s appointments to help keep him as healthy as possible. 

For Parker and his CF care it involves his pulmonologist the most which all Cystic Fibrosis patients see. Parker though also has a gastrointestinal doctor, nephrologist and ENT doctor that he has to regularly see due to how Cystic Fibrosis affects his body.

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

Parker also was able to start Trikafta last year. 

 Trikafta, is approved for ages 2 and up and is changing the lives of many adults and children with CF.

Trikafta is not available for everyone one with CF though due to needing a certain CF mutation to qualify.

However Trikafta and some other amazing CF drugs are NOT a cure. It’s one for medicine added to his lengthy list and sometimes CFers might have to stop taking them if they aren’t working with their bodies properly. 

We will continue to be hopeful that Trikafta will benefit Parker though and continue to fight for a Cure! 

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! It’s free to walk and we would love your support for a fun filled day! If you feel it in your heart please consider making a tax deductible donation to help Cystic Fibrosis.