Early in her life, Kinsley’s parents noticed that she wasn’t progressing as quickly as her peers. Their first concerns were raised when, by her first birthday, she was only army crawling. In an effort to help her progress, she was placed in physical therapy which, while initially helpful, began to uncover further challenges. By 15 months, her parents noticed that she had begun to drag her toe with each step. Then by 18 months, a new symptom appeared: nystagmus, a rapid, uncontrollable movement of the eyes.

A close family friend, who also happens to be an ophthalmologist, made a few suggestions but ultimately recommended a thorough checkup. This recommendation led through a path of doctors and ultimately to an MRI to rule out a brain tumor. The results of that MRI were both a relief, in that no tumor was present, and concerning as they revealed Kinsley had less white matter than other children her age. This discovery was the springboard for a series of tests and consultations to find the right doctors, who had any answers to what was happening. In May 2023, just a few months past Kinsley’s second birthday, a diagnosis finally came: an extremely rare mutation in the TUBB4A gene. With this diagnosis came a wave of both relief and motivation for her family as it provided both answers and new challenges to navigate.

Despite these hurdles, Kinsley’s determination never wavers. She relies on a walker and orthotics making everyday movement difficult. To compound those hurdles, she is constantly fighting imbalance and difficulty with fine motor tasks. Her greatest dream is to run and play freely with her peers, but her rigid movements and equipment often make this a challenge. Kinsley’s weekly schedule is packed with therapies to help her develop skills most take for granted – from physical therapy and hippotherapy to occupational and speech therapy. Her hard work and determination are yielding results. She is working to build core strength, has learned to stand from a sitting position, and she has even learned to stand independently – albeit for brief moments. Recently, she has proudly taken her first steps and learned to undress herself, small victories that have meant the world to her and her family.

Kinsley’s family has embraced a “practice makes permanent” mentality, encouraging her to push her limits daily. Their steadfast support, combined with Kinsley’s incredible resilience, has made for a powerful force. It is this spirit of resilience and unending joy that Kinsley uses to inspire everyone who meets her, filling them with hope and happiness.