Cystic fibrosis (CF) is an inherited disease that affects multiple organs throughout the body, most notably the lungs, pancreas and liver. It is a progressive condition, meaning symptoms and complications can become more severe over time. Today, nearly 40,000 children and adults in the U.S. are living with cystic fibrosis.
One of those individuals is six-year-old Kinsley, whose journey reflects both the challenges and possibilities of living with CF. Despite the obstacles that come with managing a complex medical condition, Kinsley approaches each day with energy, determination and joy. With the support of her family, loved ones and Maxim home health nurse, she continues to thrive while embracing all the experiences that make childhood special.
A life-changing diagnosis
Kinsley received her cystic fibrosis diagnosis when she was just seven days old. The news initially felt overwhelming for her family.
“At first, we thought it was a death sentence,” Kinsely’s mother Andreka recalls. “We had always heard that people with CF do not live long lives.”
As they learned more about the condition and available treatments, their outlook changed. They discovered that modern therapies could help Kinsley live a long, healthy life.
Because Kinsley was born at just 24 weeks, she spent 255 days in the hospital after birth. During that time, her family focused on helping her overcome the many challenges that came with extreme prematurity and CF. Once she came home, daily life looked very different, and the family adapted to meet her ongoing medical needs.
Building a support system with Maxim
Kinsley began receiving care through Maxim when she was eight months old. Since then, home health nursing has played a vital role in helping her family manage her condition.
Kinsley’s nurse, Katharine, provides support with treatments, monitors Kinsley’s health and helps coordinate care both at home and at school. This support allows Kinsley to participate in everyday childhood experiences while receiving the medical attention she needs.
Having a dedicated nurse has given the family peace of mind and has created a strong partnership centered on Kinsley’s well-being.
Making childhood the priority
Kinsley’s family works hard to keep her diagnosis from becoming the center of her identity. While they take precautions and make accommodations for her medical needs, they want her to enjoy the same experiences as her peers. They encourage her to play, attend school, spend time with friends and family and take part in the activities she loves.
Their philosophy remains simple: Kinsley is a child first.
“We want her to experience the same joy and excitement as other children,” Andreka says. “Our goal has always been to help Kinsley feel like a kid first and not just a child with a medical condition.”
Overcoming daily challenges
Living with CF presents several obstacles for Kinsley.
When she plays outside, she can become fatigued more quickly due to her condition and her use of ankle-foot orthoses (AFOs). Mucus buildup may affect her appetite and make eating more difficult. Seasonal allergies can intensify respiratory symptoms, creating additional challenges.
CF also impacts her digestive system, and increased sodium loss puts her at greater risk for dehydration. Managing these symptoms requires close monitoring and consistent care.
Navigating school safely
School brings both excitement and extra precautions for Kinsely’s family.
Because children with CF face a heightened risk of cross-infection, Kinsley cannot share a classroom with another child who has CF. Her nurse accompanies her throughout the school day to monitor her health and help manage her medical needs.
If multiple students in her classroom become sick, Kinsley’s family keep her home to reduce her exposure to illness. Although starting school came with understandable concerns, Kinsley has embraced the experience and enjoys being part of the classroom environment. Her favorite subjects are reading and music, two interests that reflect her love of learning and creativity. When she is not in school, Kinsley enjoys spending time outdoors, watching her favorite shows on her tablet, and, most of all, singing and dancing to music.
Learning to advocate for herself
Even at a young age, Kinsley has started learning how to recognize and communicate her needs.
When she notices her oxygen levels may be dropping, she often alerts her nurse by saying, “oxygen,” or she will sit down to signal that she does not feel well and needs help.
These moments demonstrate an important skill that her family continues to nurture: self-advocacy. As Kinsley grows, her family wants her to understand her condition, communicate confidently about her health and take an active role in her care.
Looking toward the future
Kinsley’s family hopes she grows into a happy, confident and independent young woman.
More than anything, they want her to know that CF does not define her future. They want her to chase her dreams, embrace new opportunities and believe in her ability to achieve whatever she sets her mind to.
Caring for a child living with CF can be challenging, but you don’t have to do everything alone. Maxim Healthcare understands the unique needs of families caring for children living with CF. Visit our pediatrics page to learn more about our services and contact your local Maxim office for more information.
