Genevieve Harris loads her daughter, Evalynne Stringer, and her two sons, Killian and Declan, into their handicapped-accessible van. Between working a full-time job, driving Evalynne to her after-school therapies, and making sure the boys don’t miss baseball practice, Harris’ schedule is packed.
“But within all that beautiful chaos, there is so much love and laughter,” Harris said. “There is truly never a dull moment in our house — we are constantly joking, pulling lighthearted pranks on each other, and singing at the top of our lungs on the way to every destination.”
Though Evalynne enjoys life to the fullest, adores Bluey and Hello Kitty, plays with her baby dolls, and devours her plate of chicken Alfredo at Chili’s, her life is different from those of others her age.
Evalynne was born at just 29 weeks of gestation. “When we arrived at the hospital in Tullahoma, the staff assumed it was false labor. But the moment the nurse checked me, her face went completely white. My heart pounded. You never think you’re going to be that statistic,” Harris said. “To make matters worse, Tullahoma didn’t have a neonatal intensive care unit (NICU) to care for a preemie. The weather was stormy, so LifeFlight couldn’t fly. The closest specialized team was at Erlanger in Chattanooga — two hours away!”
Evalynne was in the NICU for two months. “A few days in, we finally got the bittersweet joy of holding her and, later, experiencing skin-to-skin contact. But the fear was constant. For almost her entire stay, Evalynne struggled to breathe on her own and regulate her body temperature. Then on Halloween, we got a frantic call. Her heart was beating dangerously fast, and the medical team couldn’t get it to slow down. She was diagnosed with a heart condition called paroxysmal supraventricula tachycardia, and at just 19 years old, I had to quickly learn how to calculate her heart rate and administer her cardiac medication,” Harris said.
Finally, Evalynne passed her car seat safety test and was cleared to go home. “But the morning of our discharge, six doctors walked into our room. Looking at their faces, my heart sank. I knew something was wrong. Though her previous brain scans had been normal, her final discharge scan revealed a mass. They diagnosed her with PVL, or periventricular leukomalacia, a brain injury common in preemies. Worst-case scenario, this could be cerebral palsy. They asked us to follow up with a neurologist. Just like that, the joy of bringing my baby home was clouded by the terrifying reality of a six-month waiting game.”
The neurologist confirmed the diagnosis. “The doctor explained that the mass on her brain was blocking the signals that tell her arms and legs how to move. Evalynne would never sit up, walk, talk, or be cognitively aware. I felt completely numb. Looking at her today, it is clear that the doctors severely underestimated her spirit. She has spent her entire life defying those exact ‘nevers’ — finding her voice, sharing her brilliant smile, and filling our lives with so much love and laughter.”
In the early days of Evalynne’s diagnosis, her mother was rocked to her core. “I found myself wrestling with questions that had no answer. Why her? Why my baby? I was terrified of the unknown, constantly wondering what our future would look like or if she would even have a life at all. It took several months of grieving to accept the diagnosis and to face the reality of the life we were given. Moving through the anger allowed me to find my footing and accept our path. I promised to give Evalynne the absolute best life possible.”
When Evalynne was smaller, transporting her was easy, but every milestone reached on her growth chart brings a new set of speed bumps. “While she courageously learned to roll over and eventually mastered an army crawl, sitting independently and walking have remained out of her reach,” Harris said. “At age 3, we faced another hurdle when she was diagnosed with epileptic seizures. The challenges haven’t stopped. Just last week, we received the news that she has developed bone weakness and scoliosis in two different locations. It’s a lot for her body to fight, but it’s exactly why her therapies and specialized care are more important than ever.”
For most of us, bathing is a simple task. We get in and out of bed with ease. We dress, feed ourselves, and go about our lives without assistance. “Evalynne requires a carefully coordinated routine and a lot of specialized equipment. Her mornings begin with being bathed in her supportive bath chair, followed by diapering, dressing, and fitting her custom ankle-foot orthotics onto her feet. From there, she is placed in her wheelchair for transport to school. During the day, she is supported oneon-one by her wonderful aide. Evalynne participates in physical and occupational therapy weekly. Her hard work doesn’t stop when the school bell rings. She also completes private physical and occupational therapy sessions after school. Once she is back home, her independence shines! She uses her electric wheelchair to navigate her world alongside a specialized stander and a gait trainer, which are vital for building muscle tone and strength in her legs.”
Evalynne’s electric wheelchair can be unreliable, so she desperately needs a manual wheelchair, which isn’t covered by her insurance. “We can’t cover the immense cost of her physical care without sacrificing our family’s stability,” Harris said.
They recently took out a loan for a handicapped-accessible van. They are hopeful that their recent partnership with the nonprofit Help Hope Live will help them raise much-needed funds to cover their car payment and purchase equipment and home modifications that will allow Evalynne to continue to thrive.
“Instead of constantly worrying about how we will pay for the next hurdle, we can channel our energy into what truly matters — maximizing Evalynne’s quality of life and supporting her as she continues to shatter every limitation.” GN
To donate to Evalynne’s Help Hope Live campaign, visit www.helphopelive.org/campaign/26872/
