If one were to look at a picture of Amber and Corey Teter’s, of Buckeye, 15-month-old blonde-haired, blue-eyed baby boy, an, as-of-yet, incurable disease would be the last thing to cross their mind. Unfortunately, that is not the case. At just four weeks old, Jeryl Teter was diagnosed with cystic fibrosis [CF], and though he remains a happy, healthy baby, his family is fighting hard to help raise awareness and find a cure.
For those who are not familiar with the disorder, cystic fibrosis is a genetic disease that causes a thick build-up of mucus in the lungs, pancreas and other organs. The disorder leads to persistent lung infections – progressively limiting a patient’s ability to breathe – and hinders the pancreas from releasing the digestive enzymes needed to break down foods and absorb vital nutrients.
A number of symptoms are commonly linked to CF patients – including persistent coughing and salty-tasting skin – but for Jeryl, nothing out of the ordinary was present at the time of his birth.
“The only thing we really noticed was that Jeryl wasn’t gaining weight as quickly as the doctors would like him to,” grandmother Dawn Duncan, of Buckeye, explained. “Jeryl weighed six pounds when he was born, and by the time he turned one month old, he weighed eight pounds.”
At first, the family thought Amber’s decision to breastfeed might have played a factor in his lack of any significant weight gain. According to Jeryl’s doctors, he should have been gaining an ounce a day, and so, the family switched Jeryl to formula.
The transition helped, but it wasn’t enough to solve Jeryl’s weight issues, and four weeks after Jeryl was born, the Teters received the results of the blood test taken at the time of his birth.
“The results raised a red flag,” Duncan said, “and we had to take Jeryl to Charleston for a Sweat Test.”
Sweat tests measure the concentration of salt in a person’s sweat and is the most reliable way to diagnose CF in a patient.
Typically, when CF patients sweat, they produce more salt in their sweat and run a greater risk of becoming dehydrated more quickly than the average person. Because of this, CF patients have to be monitored more closely.
“The results of the blood test showed both Amber and Corey carried the mutated genes for CF,” Duncan said, “but the sweat test was done for absolute confirmation. We learned that Amber was a carrier of the mutated gene during her pregnancy, but it’s common for people to be carriers.
“It’s just when two carriers of the mutated genes come together that the chances of passing along the gene increase. Typically, carriers only have a one in four chance of actually passing it along. I won’t say that Jeryl was unlucky, but he was the one in four chance.”
Since receiving Jeryl’s diagonsis, the Teters and the Duncans have adjusted to caring for a child with CF.
Every day, twice a day, an inflatable vest is placed on Jeryl, and he undergoes a 30-minute treatment. The vest vibrates at a high frequency, which helps to break down, loosen and thin the mucus inside of his chest.
He receives two to three breathing treatments a day to help keep the mucus loose and his airways open, as well. With his breathing treatments, Jeryl is given Albuteral to relax the muscles in his airway and increase airflow to his lungs; Pulmozyme to loosen and thin the mucus; and a third medication to keep his lungs moist.
Jeryl also takes pancreatic enzymes orally before every meal.
According to the Cystic Fibrosis Foundation, the pancreas produces a thick mucus that prohibits the release of enzymes needed for digestion. By taking the enzymes orally, Jeryl’s body is given the help it needs to break down food and absorb nutrients.
“Despite his diagnosis and the treatments, Jeryl’s happy,” Duncan said, “and he’s a healthy, outgoing baby. We hope to keep him that way.”
When asked what it was like to hear the news, Duncan said that, as a grandmother, it was heartbreaking.
In general, CF is a name that’s heard on occasion– most often spoken in passing on a television show, such as Grey’s Anatomy – but few actually know what the disorder, itself, is.
According to the Cystic Fibrosis Foundation, there are 30,000 confirmed cases of CF in the United States and only 70,000 in the entire world.
“It’s very rare,” Duncan added, “but it does happen. A lot of people just don’t realize they have it until they get older. They can go through life thinking that their trouble breathing is a result of asthma, or that the child who’s not gaining weight is a picky eater – maybe they have a high metabolism. Unless someone knows it’s an issue, they won’t know what symptoms to look for.”
To help raise CF awareness and to “ride for a cure,” the family has organized a poker run for Saturday, May 14. The run will begin at 11 a.m. at the Marlinton Mini Park, and participants will follow a route that showcases Pocahontas County and neighboring Virginia counties before ending at Stillwell Park with a cookout at 5 p.m. The cost is $20 per rider, and $10 per passenger. Rain date is scheduled for the following day – Sunday, May 15.
“We want to try to help find a cure,” Duncan said, “and we want him to be able to live a long and healthy life. We’re just hoping we can do something to help.”
Cailey Moore may be contacted at firstname.lastname@example.org