Kyndall

Kyndall's Journey

Born in September 2007, Kyndall was a bright and excellent student — the kind of child whose academic performance and energy filled every room. At age 7, a single seizure arrived without warning. It was the first sign of something that would gradually, persistently, reshape her life.

More seizures followed. Hand tremors developed. Balance became unreliable. Fine motor skills began to decline. The grades that had come so easily started to slip — not from lack of effort, but because her brain was changing in ways that no one yet understood. By age 10, she was experiencing pain while walking, hearing complications, and tongue fasciculations. Referrals sent her to Vanderbilt University Hospital for bi-weekly evaluations.

Standard imaging returned normal results. Genetic epilepsy panels were negative. Then, on December 4, 2018, the diagnosis arrived: SMA-PME. The name finally fit what her family had been witnessing for years.

The years that followed brought insurance changes that forced transitions to neurologists unfamiliar with her disease. Seizure medications worked for six months at a time before losing effectiveness. Aspiration complications developed, and her diet became restricted to liquids and small portions. By age 15, every available medication had been exhausted.

Through it all, Kyndall kept showing the world who she is. Art. Music. Horror cinema. Rock climbing. Beaches and horseback riding and waterfalls. She wanted to learn to surf. Her spirit never matched the limitations placed on her body — and that is exactly why this research is a race against time.