Kinsley's Story: A Rough Ride for a Ray of Sunshine

by Alexis Stadler

My name is Alexis Stadler. I live in Waxhaw, North Carolina with my husband Derek and two daughters, Charlotte, who is seven, and Kinsley, who is six. We also have a pack of family dogs, including Winnie, Roger, and Hope, Kinsley’s service dog. Sometimes I tell people that we are living life in three-month increments, because that’s the length of time between repeat scans to check on the status of my daughter Kinsley’s inoperable brain tumor. The life that we live, and Kinsley’s ability to be home with us and go to school with her friends, is completely dependent on Medicaid. 

We like to call Kinsley our little ray of sunshine, because that’s exactly what she is. She is quick-witted and so funny, with great comedic timing. She loves dancing and singing, is an active member of Girl Scouts, and loves school. She’s a real social butterfly who gravitates to other kids and thrives on that socialization and friendship. As a recent kindergarten graduate, she’s already looking forward to first grade. 

To say that Kinsley’s had a rough ride is probably an understatement. She was born with Neurofibromatosis type I, an inherited condition that causes tumors to grow in the nervous system, but that’s not the only thing she’s had to deal with. After her first few months of life, it was clear that something else was wrong, and after fighting for a diagnosis, we learned that she has Hypophosphatasia, a rare metabolic bone disorder that’s also inherited; I, two of my sisters, and my father discovered we all have less severe forms thanks to her diagnosis. And then in 2022, she was diagnosed with her brain tumor, which sits across her brain stem and cerebellum. She had 70 weeks of weekly chemo treatments that were incredibly grueling for her and for all of us. 

When Kinsley was five months old, I applied for North Carolina’s Medicaid waiver program, the Community Alternatives Program for Children. We were rejected. They said she wasn’t sick enough, even though she’d been tube-fed since she was two months old, she struggled to swallow, and routinely choked on her own saliva. Even with my health insurance through the State of North Carolina as a public school counselor, her medical costs were so high that we ultimately had to declare bankruptcy. We downsized our entire life and moved into a smaller house in a neighborhood where instead of parks, we got gunfire. 

It wasn’t until she was diagnosed with hypophosphatasia that we qualified for Medicaid, and even that was, and continues to be, a fight. Medicaid pays for the private duty nursing that allows Kinsley to go to school, which is such an essential part of her life and future — her kindergarten teacher told me she was surprised that Kinsley attended school so much, given her illness, and that’s because of her nursing. At home, nursing is what allows me to continue to work as a counselor who serve teens and adults in my community. We need these extra hands to keep Kinsley alive and bring her life some degree of normalcy. Those hands also keep Kinsley out of the hospital: During her cancer treatment, she could receive some of her care at home and be with her family instead of racking up expensive hospital bills and living in isolation. 

She also receives critical occupational, physical, speech, and feeding therapy through Medicaid that are so important for her continued development, health, and safety at home. These are the difference between institutionalization and being able to live in her community. 

All this information I’m seeing about Medicaid being cut is terrifying. Watching my daughter almost die time after time has been so traumatizing, and when her repeat scans to check on the growth of her tumor come up every three months, my heart is in my throat until we get the results. 

When people tell me that Medicaid has a lot of waste and fraud, I want to show them the mountains of paperwork and untold hours I spend on the phone coordinating Kinsley’s Medicaid eligibility and care. It’s practically a full-time job. Once applied and approved, we have to constantly recertify, and understaffing at our local Medicaid office sometimes means that these recertifications sit for weeks or months. Kinsley can’t afford to wait on something like coverage for her nursing care, or a replacement for her broken feeding pump that we’ve currently Macgyvered into functionality. 

We already have an incredibly stringent process to apply for Medicaid, with waiting lists for waivers like Kinsley’s that are years long. The paperwork to continue to document your eligibility once you’re on a waiver can be overwhelming. If your concern is fraud, the real place to look is providers. Recipients like us aren’t doing this for fun. Our kids are very, very sick, and Medicaid keeps them alive, keeps them in their communities, and helps us work and participate in society. It’s a program that benefits all of us.