Brothers Tanner, 15, and Caleb, 12, continue to outlive the grim diagnosis doctors originally gave their parents as babies. The family looked for different opinions from doctors and credits the treatment plans at Children's Health, which they say have helped their sons live life to the fullest.
The Roeseler boys, who live in McKinney, were diagnosed with Cystic Fibrosis when they were babies, and their parents have not let that stop them.
"They are very normal kids, If you saw their medical chart he would not expect them to be as full of life as they are. They're full of like very normal teenage boys," said Kiri Roeseler, their mother.
Cystic Fibrosis, as defined by Children's Health, "is an inherited genetic condition that affects mucus production, leading to lung infections and breathing difficulties. Normally, mucus is a slippery, watery substance that keeps the lining of organs moist so they can function properly."
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The life-threatening disorder can damage the lungs, digestive tract and other organs.
The mother of two said she and her husband did genetic counseling while they were pregnant with their oldest son Tanner because they knew they were carriers of the disease.
"They told us, 'You know, your child probably won't have a great quality of life. He's not going to get to do a lot of things,' recalled Roeseler, who wouldn't take that for an answer. "When Tanner was 5, we lived in Mississippi, the hospital told us to start planning for the end of his life, that we needed to go ahead and do his 'Make a Wish,' because he wouldn’t have enough quality life.”
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The family searched for other opinions and moved to North Texas about a decade ago after meeting with healthcare providers at Children's Health. Tanner is now a sophomore in high school.
“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 what doctors initially anticipated.
The 15-year-old enjoys Minecraft, wants to open up a coffee shop and pastry bar in Paris, France and has a love for animals. Tanner lives life like most kids, except him and his brothers have a few extra steps they have to take every day.
“For me it’s basically sitting down, doing breathing treatments, taking over 30 pills," said Tanner about his daily routines which also include taking enzymes with every meal.
His brother, Caleb, loves to play sports and is quite athletic, even with only one lung. He too has a similar regime every day when it comes to medications and breathing treatments.
“CF impacts my life because it makes it hard to breathe, and when I get tired really easily but I tune it out and keep going," said Caleb who continued that he does it, "To prove to other kids they can do it themselves, if I can do it, they can do it.”
“Children's Health has changed the trajectory of our life. Before, we would only plan we would never plan further than, say, a month, two months," said Roeseler about the family's concerns about planning for the worst.
She said they're 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 sixteen months, they have not had to be admitted.
“They just started a new medicine that's being called the miracle drug of cystic fibrosis, it's called 'Trikafta.' Tanner started it in 2017 and it actually fixes the underlying cause of cystic fibrosis. Every medicine up until this point has only fixed the symptoms, this one is actually correcting the cells and making them work properly. Children born today who get this drug as an early intervention are expected to live into their 50s and 60s," explained Roeseler, whose youngest son is also on the medication.
The family now thinks long-term, compared to the past when they wouldn't plan for more than a month or weeks out. They continue to travel around the country and experience different adventures such as climbing the Statue of Liberty, swimming in both the Pacific and Atlantic Oceans, along with 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," said Tanner.