patient story

patient name: Vanessa

age: 6

condition: cystic fibrosis (CF)

seen in: Cystic Fibrosis Center

providers: Gary Mueller, MD

For 6-year-old Vanessa McKinney having cystic fibrosis (CF) doesn’t define her – it’s simply a part of who she is, much like going to kindergarten, dancing and singing. Her motto: Be accepting of all because everyone has something different about them.

However, that doesn’t mean there aren’t challenges. Her mom, Michelle, shared that for some time after her CF diagnosis, the family lived in a “bubble,” and it was often “no” or “don’t” to certain activities. Every little sniffle must be monitored. While on average, Vanessa sees her care team every three months, it can be sooner if she’s not feeling well. And, if she becomes too sick then she’s admitted to Dayton Children’s for up to two weeks at a time. During that time Vanessa receives IV antibiotics while her care team monitors and adjusts her treatment as needed

Even with those ups and downs, Michelle and Kenneth – Vanessa’s dad – take comfort in knowing that there is an experienced team surrounding their daughter every step of the way.

Diagnosed with CF at just a few days old during her newborn screening, Vanessa’s parents had already prepared themselves for the potential diagnosis since their oldest son also has CF and a strong care team was already in place at Dayton Children’s Hospital. Today, the family lives in a “happy medium” space, where Vanessa and her brother can live as normal of a life as possible but with parameters in place to ensure their health is first and foremost.  

“When I was pregnant for Vanessa, it was always in the back of my mind that she might walk the same CF journey as her brother. However, it was still a lot to hear and very difficult to accept when it was confirmed that Vanessa also had CF. It became a lot harder because it was suddenly compounded by two,” said Michelle.

When Vanessa was a baby, Gary Mueller, MD, program director of the Cystic Fibrosis Center at Dayton Children's Hospital, met with the family and lead the care from day one. She shared that given Dr. Mueller’s expertise in treating children with CF, the family felt relief in knowing that a pediatric expert knew the ins and outs of the disease and was prepared to be proactive with Vanessa’s treatment plan.

“The Dayton Children’s team jumped in right away to not only start caring for Vanessa but to also begin building a treatment plan designed uniquely to her,” Michelle said. “They knew exactly what Vanessa needed and continue to partner with us to ensure that our daughter gets the right care.”

Michelle said the care team – consisting of pulmonologists, nurses, respiratory therapists, social workers, clinical dietitians and pharmacists – have become part of the McKinney family. They’ve seen the high and lows and are there every step of the way. Whenever she is feeling overwhelmed, full of questions or just needs someone to listen, the team is there – not just for Vanessa or Michelle, but for the entire family.

“At each appointment, every member of our team is there so we can address any concerns right away. If Vanessa isn’t gaining weight, then we’re meeting with her dietitian to adjust her food or add protein. Whatever needs to be done, the team is there for her and for us. They’ll answer any questions, but also give reassurance. They have truly become like a second family,” she said.

It’s that proactive, engaged approach that allows Vanessa to do what most kindergartners her age do - live her life to the fullest. Her favorite thing right now? Cheerleading with the Vandalia-Butler Wee Aviators, the Vandalia-Butler City Schools youth pee wee football and cheerleading program.

“Vanessa is a firecracker and such a joy to be around. She has a ‘take me as I am’ approach to life. Having CF is just one part of who she is, but it doesn’t define her,” Michelle said. “There are doors opening every day with more treatment options becoming available. We’re hopeful for the future and are truly grateful to Dayton Children’s for everything they do for us.”