A Veteran Father’s Fight to Keep His Son Alive

Andrew Johnson, a proud Navy veteran, moved to Tennessee in 2016 after serving nearly 11 years at Hampton Roads Naval Air Base in Virginia. Today, he manages a custodial services company and is a dedicated caregiver to his son, Ayden. 

Ayden was born at Langley Air Force Base in 2005. At just four months old, Ayden was diagnosed with semi-lobar holoprosencephaly, a rare brain malformation that affects development, motor skills, and speech. He was later diagnosed with diabetes insipidus and infantile cerebral palsy. Ayden spent weeks in and out of Neonatal Intensive Care Unit (NICU) following his diagnosis. 

Now 19-years-old, Ayden is a joyful and social young man. He attends Siegel High School, enjoys being sung to by his grandmother, and loves watching cartoons (especially Mickey Mouse). Despite his bright personality, Ayden has significant medical needs that require around-the-clock care. He is non-verbal, uses a wheelchair, and is fully dependent on a feeding tube. He needs support with every aspect of daily life.  

TennCare Medicaid has made it possible for Andrew to provide his son with the care, support, and stability he depends on every day. It covers Ayden's wheelchairs, feeding equipment, bath chair, adult car seat, medications, eye-gaze communication device, and the specialized formula that keeps him nourished.  

As Ayden moves into adulthood, he is applying for continued coverage through Employment and Community First (ECF) CHOICES, a TennCare program for people with developmental and/or intellectual disabilities. But during the transition, a clerical error left him uninsured for a couple of weeks.  

“It was one of the scariest moments I’ve had trying to care for Ayden,” Andrew shares. Even with two steady incomes, the high cost of Ayden’s medical care far exceeded what their family could manage without assistance from Medicaid. “I did the numbers and realized there was no way we could afford this on our own,” Andrew recalls. “I didn’t know if I was going to be able to keep my son healthy and alive without admitting him to the hospital and figuring out the bills later.”  

Andrew’s story is the reality for many Tennessee families. Thousands of children depend on Medicaid for life-sustaining care. Cuts to the program would force parents into impossible choices—and put lives at risk. Ayden’s care may be complex, but his right to affordable health care is simple and should never be up for debate.