At age 9, multiple seizures were recognized, alongside hand tremors, balance issues, and declining fine motor skills. School grades dropped from A's as cognitive changes took hold. By age 10, she was experiencing walking pain, hearing issues, and tongue fasciculations, and was referred to Vanderbilt University Hospital — a two-hour drive — for visits every two weeks. Routine scans and a genetic epilepsy panel came back negative. Doctors initially believed the condition was not genetic.
On December 4, 2018, SMA-PME was officially confirmed. By age 13, a change in insurance forced a transition to neurologists unfamiliar with the disease. Seizure medications proved effective for no more than six months before losing their effect. She began aspirating; her diet was restricted to liquids and tiny pieces. Cognitive decline continued despite her remaining in school.
By age 15 in 2023, Kyndall had exhausted all available medications. She loved art, music, horror films, rock climbing, beaches, horseback riding, and waterfalls. Surfing was a dream she never got to fulfill. Her younger sister never knew her before the illness.
