2012 - present
Tatyanna Zazalak loves horses and Disney movies. The nine-year-old even has a Welsh pony of her own named Zan. She's listens to Coeur de Pirate and enjoys Dora the Explorer. She smiles when her younger sister Lexi plays with her. She has been to China three times. She used to climb everything and loved getting into trouble.
She also has Late Infantile Batten Disease, but that isn't the first thing she'd probably want you to know about her.
Tatyanna is four-years into her battle with the disease. a rare, fatal autosomal recessive neurodegenerative disorder - one of four forms of the disease - which refers to the build-up of substances called lipofuscins in the body's tissues because the body is not properly clearing them out of the cells. Tatyanna's mother Janelle likes to describe it in simpler terms. "Essentially with Batten's it's like the garbage collectors in her (Tatyanna's) brain have gone on strike... Eventually the garbage increases to the point where the brain can no longer function."
In the second half of Tatyanna's short life she has lost all the things she gained in her first half, including the ability to speak and communicate with the outside world, to walk, and to use her legs and arms. She has lost her sight to a degree. She can no longer swallow food and must be fed through a tube. But Tatyanna's family, her father Trent, mother Janelle, older brother Keirnan, older sister Skylar and younger sister Lexi have chosen from the beginning not to focus on what Tatyanna has lost. They have put their focus into giving Tatyanna as happy, normal and dignified a life as possible. And in the process Janelle and Trent have essentially become spokespeople for Batten's awareness, helped other families dealing with batten's disease, and fought every obstacle, whether medical or bureaucratic, that has stood in Tatyanna's way. As Janelle puts it, "not fighting was never an option."