patient story

patient name: Jacob Thornton

age: 10

condition: Cystic Fibrosis

seen in: Cystic Fibrosis Center

providers: Mark Minor, MD

Jacob is an athletic kid who also loves gaming and is almost a black belt in Taekwondo! But he is also a kid that has been living with Cystic Fibrosis (CF) since birth – impacting his physical and mental health.

At just two days old, Jacob’s life took an unexpected turn when he was rushed to Dayton Children's Hospital for emergency surgery due to a blockage in his intestines. A blood test revealed the cause of this blockage to be CF, a life-changing diagnosis. For his parents, Angie and Tony, this diagnosis brought a whirlwind of emotions, compounded by their unfamiliarity with the disease.

CF is a genetic disorder that primarily affects the lungs and digestive system, causing thick, sticky mucus to build up in the lungs, making it difficult to breathe. It can also lead to blockages in the digestive system.

As first-time parents, Angie and Tony were overwhelmed, but they received the guidance and reassurance they desperately needed when they met Jacob’s first pediatric pulmonologist at Dayton Children’s, Dr. Stephan Wolf. He explained the course of care, assuring them that while the road ahead would have challenges, Jacob could still lead a full and active life.

“It was terrifying at first, as I had never really heard of CF before Jacob’s diagnosis,” recalled Angie. “But Dr. Wolf was amazing, and it was only the start of our partnership with the pulmonary team at Dayton Children’s!”

the start of a strong partnership

At one month old, they were excited to celebrate their first Father’s Day as a new family, but Jacob faced another life-threatening challenge. He became pale, was vomiting and in visible discomfort. His parents knew something was wrong and rushed Jacob back to Dayton Children’s. It turned out that scar tissue had formed over his intestines and needed emergency surgery to remove fifteen inches of his bowel, plus his appendix.

The Thorntons spent much of Jacob’s early months at Dayton Children’s, and the hospital staff quickly became like family to them. In fact, Angie’s entire maternity leave was essentially spent by his bedside.

“The nurses all wanted to care for Jacob, each eager to be by his side. They welcomed us with open arms, always answering our questions and treating us like we were part of their family,” Angie said.

She even remembered one Christmas when Jacob was in the hospital, and Santa paid a visit, gifting him a toy. It was a special moment that brought a bit of normalcy to their stay.

overcoming challenges: Jacob's resilience in the face of CF

Today, Jacob is an active kid attending fifth grade at Southdale Elementary School in Kettering. He is incredibly athletic, loves sports, and is just one belt away from achieving his black belt in Taekwondo. Recently, he was selected for the elite team at Metro FC Soccer Club in Kettering. His favorite subject is math, and when he’s not in school or on the field, you can find him playing his PlayStation – proving CF won’t hold him back!

“Jacob is very competitive and loves to try new things. If you give him something to do with a ball, he’s going to excel. We’ve learned with CF that the more active he is, the better it is for breaking up that thick, sticky mucus in his lungs,” Angie explained.

Dr. Wolf once explained to Angie that for Jacob, breathing can feel like trying to breathe through a straw. The airways are narrow, and the sticky mucus that accumulates makes it even more difficult to breathe. To help break up the mucus when Jacob was younger, he used Smart Vest technology. The vest, connected to a machine, would gently shake Jacob to loosen the mucus in his lungs, making it easier to clear his airways. This technology made Jacob’s care at home much more manageable.

lifelong care and support that goes above and beyond

Dayton Children’s has remained a constant in Jacob’s life and has included many hospitalizations, especially due to croup. Croup can escalate quickly for kids with CF, so quick action is important. With the support of his pulmonary team, a proactive action plan was developed, which included administering steroids at the first sign of trouble. This proactive plan has kept Jacob out of the hospital since 2019!

Routine check-ups at Dayton Children’s every three months ensure that Jacob remains on track with his care. Dr. Mark Minor now oversees Jacob’s care since Dr. Wolf’s retirement. Jacob’s treatment includes a groundbreaking medication called Trikafta, which Angie describes as a “miracle drug.” This new therapy has made a world of difference in Jacob’s quality of life. Trikafta is a prescription medication used to treat CF. the “tri” in Trikafta refers to its three components, which work together to improve the function of defective CFTR proteins – the underlying cause of CF – helping them work more effectively.

But Jacob’s journey isn’t just about physical health. Like many children navigating life with chronic illnesses, Jacob has also faced challenges with his mental health. His care team provided Jacob and his family with the support they needed to navigate these emotional aspects he was facing. The hospital’s holistic approach to care – addressing both the physical and mental health needs of patients and their families – has been crucial in Jacob’s overall well-being.

what mattered most

With the care and support from Dayton Children’s and his family, Jacob continues to thrive! Angie and Tony remain incredibly grateful to the Dayton Children’s team for their ongoing dedication to Jacob’s well-being. “We feel so fortunate to have Dayton Children’s by our side. It’s a reassuring feeling knowing that they genuinely want what’s best for Jacob so he can stay the course and continue to do everything he loves to do,” Angie shared.

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