Though McKinney residents Tanner and Caleb Roeseler were diagnosed with cystic fibrosis as babies, against all odds, they continue to outlive the fatal disease.
Cystic fibrosis (CF), as explained by Children’s Health, “is an inherited genetic condition that affects mucus production, leading to lung infections and breathing difficulties.” The life-threatening disorder can damage the lungs, digestive tract, and other organs.
When interviewed by NBC 5, their mother, Kiri Roeseler, said that while pregnant with Tanner, she and her husband attended genetic counseling sessions because they were aware they were carriers of the disease. Once it was determined that their baby would have CF, they were told he would not have “a great quality of life.”
“He’s not going to get to do a lot of things,” they told Roeseler. But the boys’ parents did not accept that prognosis.
Kiri added that when Tanner, now 15, turned 5, a Mississippi hospital told them to start planning for the end of his life, advising them to write his ‘Make a Wish’ request.
The family did not let this stop them. Instead, they remained positive and continued to search for different medical opinions. After meeting with healthcare providers at Children’s Health in Dallas, they decided to move to North Texas.
Through Children’s Health, the brothers began taking a new medicine “that’s being called the miracle drug of cystic fibrosis.” Tanner was prescribed the drug, called Trikafta, in 2017, and Caleb, now 12, has begun taking it as well.
Unlike other medicines that work by addressing the symptoms, Trikafta is believed to actually correct cells and make them work properly.
Tanner is now a sophomore in high school. He and his brother live life as most others do; they just have to make time for their health regimen.
“They are normal kids; if you saw their medical charts, you would not expect them to be as full of life as they are,” said Kiri. “They are full of life like very normal teenage boys.”
Tanner enjoys Minecraft and loves animals. He dreams of opening a coffee shop and pastry bar in Paris, France.
When asked about his daily routines, Tanner said, “For me, it’s basically sitting down, doing breathing treatments, taking over 30 pills.”
Tanner’s younger brother Caleb is quite athletic, though he only has one lung. He loves to play sports. Like his big brother, he has a similar regimen every day with his medications and breathing treatments.
“CF impacts my life because it makes it hard to breathe, and when I get tired really easily, I tune it out and keep going,” said Caleb.
He does it, he said, to prove to other kids “they can do it themselves,” and added, “If I can do it, they can do it.”
Roeseler stated that they are used to staying in the hospital for about two weeks at a time several times a year whenever the kids have a flare-up, but in the last 16 months, they have not been admitted.
Their mother said children born today who use the drug as an early intervention are expected to live into their 50s and 60s.
“[It’s] Mind-altering, just kind of that mental effect, knowing that I have the possibility of doing more without limitations,” said Tanner about living longer than the doctors had initially anticipated.
In light of the boys’ extended lease on life, the family now thinks long-term as opposed to only a month or a few weeks out. They travel around the country and experience adventures such as climbing the Statue of Liberty and swimming in both the Pacific and Atlantic oceans. They also went camping in the Yellowstone and Yosemite national parks.
To sum it up, Tanner advises everyone to live life to the fullest, as nobody knows how much time they have.
North Texas Giving Day is on September 22, and Children’s Health is one of the hundreds of nonprofits in Dallas-Fort Worth that benefit from donations.
