Tyler and Becky Jo Adam said they felt like their sons were the only ones dealing with cystic fibrosis.
The disease their sons Peyton and Colton had been diagnosed with was foreign to them.
“I was scared,” Tyler said. “I had no idea what would happen.”
Cystic fibrosis, or CF, causes a person’s body to produce “unusually thick, sticky mucus,” according to the Cystic Fibrosis Foundation. The disease can lead to problems like blockages in the lungs and pancreas that can be fatal. It is a non-contagious, genetic disease.
According to the foundation, children with the disease weren’t expected to live past elementary school as recently as the 1950s. But medical advances have bumped the average life expectancy up to the mid-30s.
The couple said they had to get used to what it was like to have children who needed extra care because of CF.
Becky said the daily challenges became normal to them, because now 4-year-old Peyton and 3-year-old Colton were their first children. The boys also have a 1-year-old sister named Kaylee, who has not been diagnosed with CF.
The boys’ daily routines involve taking medications to manage breathing and enzymes to help them absorb nutrients in food that can sometimes get blocked by the mucus.
Becky said they have to make sure the boys eat enough calories, because their disease interferes with how their bodies take what it needs from food.
Every morning, the boys have “chest therapy,” wearing vests hooked up to a machine that vibrates to break up the mucus in their chests. Pretty soon though, Becky said the boys will get to take part in a more pleasant kind of therapy — sports.
Becky explained people with CF are encouraged to be involved with sports because exercise helps keep the mucus in their lungs broken up, making for easier breathing.
Both of her sons are very active, she said. Peyton, the oldest, has recently gotten involved with T-ball and had plans to play in his first game this weekend. “That’s why they are as healthy as they are,” Becky said. “We’re hoping that it will keep his lungs strong.”
She explained she and Tyler, like many other parents, would like all their children to have the chance to grow up and eventually have families of their own.
She said they live one day at a time despite the shorter lifespans their diagnoses predict. As far as she’s concerned, they have many different directions they can take in their personal lives and careers.
“I hope they don’t think CF means they have to rush their lives. There’s no telling what the kids are going to do,” she said with a smile, adding that one of her sons was bound to be a comedian even if that wasn’t his full-time job.
Though they said they did not know any other parents of children with CF when Peyton and Colton were first diagnosed, they have found support by meeting other parents at the annual Great Strides walk at Lee University to raise money for CF research.
She said they have found parents to compare notes with, but wished more people were aware of what CF was.
“There’s kids struggling so bad,” Becky said. “It’s sad people don’t even know about it.”
The family will be taking part in the walk again this year, and Becky said she hoped it would help raise awareness of the disease and contribute to the ongoing research that is being done.
Last year, the Food and Drug Administration approved a new drug called Kalydeco, which treats the causes of CF in people with one of the most common genetic types of the disease.
In February, the company that manufactures the drug, Vertex Pharmaceuticals Inc., announced that it was entering phase three of clinical trials.
She is hopeful that people with CF will be living longer once her sons hit their 30s. Her advice to people who have loved ones diagnosed with the disease is to stay positive because the lives of patients with CF keep getting better and better.
“You gotta stay strong,” Becky said. “There is hope.”
The Great Strides walk and 65 Roses 5k [3.1 mile] run events take place on April 13 at Lee University. For more information, visit the event website, www.leeuniversity.edu/greatstrides, or call 614-8406.