The Art of Faith

Every day at dawn, Tayro Obregón Rodríguez arrives at the classrooms of the Carlos Gutiérrez Menoyo educational institution—located in the rural community of Jíquima de Peláez in the Cabaiguán municipality of Sancti Spíritus to teach the art of theater to his young pupils. With love and patience, he shares his knowledge of the stage. He also serves as a role model regarding the meaning of life and faith. This young man, possessing a contagious smile and great charisma, overcomes the challenges of one of the world’s most complex diseases every single day.

In June 2014, at just 19 years old, he was diagnosed by a specialist team from the neurology department at the Hermanos Amejeiras Clinical-Surgical Hospital in Havana with Stiff-Person Syndrome (SPS), a rare, incurable condition. According to national statistics, he is the only person in the province of Sancti Spíritus—and one of just over 250 people worldwide—known to have the disorder.

“While I was studying at university, I began to feel pain in my left leg that radiated down to my big toe,” he recounts. “I underwent tests at the Camilo Cienfuegos Provincial General Hospital in Sancti Spíritus and later in Santa Clara. But there were no answers. They said it was psychological and sent me to the rehabilitation hospital.”