Finding Your Way

A Mom Shares Her Son’s Story For Cystic Fibrosis Awareness Month

May is Cystic Fibrosis Awareness Month. This month, especially, the Cystic Fibrosis community comes together to share their stories and spread awareness about this potentially life-threatening disease. I’m so grateful that Prella Smith was able to take time out of her busy schedule to discuss how her and her family support her son, Hayze in his daily battle with Cystic Fibrosis (CF).

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Neither Prella nor her husband, Jason knew they were carriers of the defective gene that causes CF until their son, Hayze was given his newborn screening tests and was diagnosed two weeks after he was born. The news was devastating and Prella took it hard.

“It was our first child, my husband’s on the road, I get the phone call and I fell into a depression.  I laid on the bed with Hayze and cried. I didn’t even know what Cystic Fibrosis was. So, I got on the internet, started to google and I lost it even more. I think it took me two weeks to come out of it. I said, ‘You know what? This is not going to take me or my child. I’m going to fight.”

So, the battle with CF began. As with some CF patients, Hayze’s pancreas doesn’t produce digestive enzymes so at two weeks old, Prella and Jason had to sprinkle the liquid enzymes on his tongue before giving him his bottles. He also has excessive mucus build up in his lungs, which is a fairly typical symptom of the disease.

“There was this tool we used to tap his little chest and back. And his sides where his lung cavities were to help keep the mucus fluid and moving. We’d lay him on our laps and tap him. It’s called chest therapy. When he was about two or three, they gave us a vest which does the therapy for us. We plug it into an air compressor and it shakes him. So, now he shakes twice a day, or more if he’s sick.”

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Now that Hayze is almost nine, he takes the digestive enzymes in pill form along with the other medications that help treat his illness.  Because of his digestive issues, maintaining a healthy weight is a major concern. His doctors prescribed a high-fat, high-protein diet and he has to eat three meals plus three snacks a day to combat the possibility of becoming malnourished.

“Hayze is the kid that would rather eat vegetables and fruit. And I’m like, ‘No, I need you to eat that pound of bacon for breakfast, please.’ He does have some digestive issues caused by the mucus. It breaks my heart to watch him get up from the table after he just ate a great meal and he worked his way through it and he’ll vomit it up because the mucus is so thick in his digestive tract. He couldn’t get the food in because he was already full from all the mucus. It’s a struggle sometimes with that, but he finally broke 70 lbs. It’s a goal he’s been working on.”

Despite these challenges, Hayze doesn’t let that stop him from being a regular kid. He plays soccer, rides his four-wheeler and jumps on his trampoline. He’s also proud big brother to two-year-old, Myelz. Hayze is aware of his limits and if his chest starts to hurt, he knows it’s okay to take a moment and rest.

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Prella and Jason wasted no time getting involved in the CF community after Hayze’s diagnosis. They reached out to the Cystic Fibrosis Foundation and organized a CF walk in their small, Pennyslvania town. And have done so every year since then, fundraising close to $50,000 annually. 

Jason’s baby is the Truckers 4 Hope truck show. 

“This is his thing he did to help push for a cure and to fight for our son. It’s a truck show we do every year. We have trucks from all over the US and over 100 trucks participate. The community comes and supports us. We have food, truck pulls, tractor pulls, games and live entertainment.”

When it comes to Cystic Fibrosis, Prella’s default is fight mode. She fights for her friends in the CF community, she fights for a cure and she fights for Hayze’s future.

“I want to see him be a dad. I want to see him sharing the experiences that we share with him. Traveling, seeing as much as he can possibly can and experiencing that love with his own wife and children. And I want him to know how proud we are of him through all of it because it’s going to be just a little bit harder for him but I know he will rise to the top and be extremely successful.”

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Written by Tamara Devers

 

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