Brothers Tanner, 15, and Caleb, 12, continue to survive the grim diagnosis doctors originally gave their parents as babies. Seeking divergent opinions from doctors, the family credits Children’s Health’s treatment plans with their sons’ ability to enjoy life to the fullest.
The Roeseler boys, who live in McKinney, were diagnosed with cystic fibrosis as babies, and their parents didn’t let that stop them.
“They are normal children. If you saw her medical records, he wouldn’t expect them to be as full of life as they are. They’re fuller than normal teenagers,” said Kiri Roeseler, her mother.
Cystic fibrosis, as defined by Children’s Health, “is an inherited genetic disorder that affects mucus production, leading to lung infections and difficulty breathing. Normally, mucus is a slippery, watery substance that keeps the linings of organs moist so they can function properly. “
The life-threatening disease can damage the lungs, digestive tract and other organs.
The mother-of-two said she and her husband undertook genetic counseling while pregnant with their eldest son, Tanner, because they knew they were carriers of the disease.
“They told us, ‘You know, your kid probably won’t have a great quality of life. He won’t be able to do a lot of things,’ recalls Roeseler, who wouldn’t take that for an answer. Tanner was 5, we lived in Mississippi, the hospital said us that we should start planning for his end of life, that we would have to go ahead and make his ‘make a wish’ because he wouldn’t have enough quality of life.”
Seeking other opinions, the family moved to North Texas about a decade ago after meeting with health care providers at Children’s Health. Tanner is now a sophomore in high school.
“Mind-altering, just sort of a mental effect, knowing I have the opportunity to do more without limitations,” Tanner said of living longer than doctors initially anticipated.
The 15-year-old likes Minecraft, wants to open a café and pastry shop in Paris, France and loves animals. Tanner lives life like most kids, except he and his brothers have to walk a few extra steps each day.
“For me, it’s basically sitting down, breathing treatments, taking 30+ pills,” Tanner said of his daily routine, which includes taking enzymes with every meal.
His brother Caleb enjoys sports and is quite athletic even with only one lung. He too has a similar regime every day when it comes to medication and respiratory treatments.
“CF affects my life because it makes it difficult to breathe, and when I get tired really quickly, but I turn it off and move on,” said Caleb, who went on to say that he’s doing it “to prove to other kids that they can do it myself, if I can do it, they can do it.”
“Children’s Health has changed our lives. We used to only plan, we never planned more than, say, a month or two months,” says Roeseler about the family’s concern about planning for the worst.
She said they’re used to being in the hospital for about two weeks at a time several times a year when the kids have a flare-up, but they haven’t had to be admitted for the past sixteen months.
“They just launched a new drug that’s being called a miracle cure for cystic fibrosis, it’s called ‘Trikafta’. Tanner started this in 2017, and it actually addresses the underlying cause of cystic fibrosis. Every drug up to this point has only corrected the symptoms, this one actually corrects the cells and makes them function properly. Children born today who receive this drug as an early intervention are likely to live into their 50s and 60s,” said Roeseler, whose youngest son is also on the drug.
The family is now thinking long-term, compared to before when they didn’t plan more than a month or weeks in advance. They continue to travel across the country and experience various adventures such as climbing the Statue of Liberty, swimming in the Pacific and Atlantic Oceans, and camping in Yellowstone and Yosemite National Parks.
“Live it (life), you don’t know how much time you have, so don’t take it for granted,” Tanner said.
North Texas Giving Day is Thursday September 22nd Children’s Health is one of hundreds of nonprofit organizations in DFW that benefit from donations.