Ten-year-old Tatyanna Zazalak is living with Late Infantile Batten Disease, a rare and fatal disorder that has robbed her of her sight, speech, and ability to move thus far. Her parents have fought to give her as normal a life as possible under the circumstances.

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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."


Janelle visits with Tatyanna on a lazy morning before getting her out of bed.

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Rambunctious younger sister Lexi plays on her parents bed as Tatyanna sleeps.

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Janelle and Trent share a moment in the kitchen as Tatyanna sleeps.

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Educational Assistant Marlaine Teall walks through the halls at Earl Oxford School with Tatyanna.

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Janelle sits in the hallway of Earl Oxford School while Tatyanna is in class for the last day of the school year in June, 2012. 

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Tatyanna and her younger sister Lexi watch movies together during one of Tatyanna's stays at the Brandon Regional Health Centre.

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Janelle brushes Tatyanna's long hair.

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Family members visit at Tatyanna's bedside during a stay in hospital in Brandon.

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Tatyanna's room during her stay at the Brandon Regional Hospital in October, 2012.

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Janelle visits with her daughter in the Pediatric Intensive Care Unit of the Children's Hospital in Winnipeg on the night of Dec. 29 after being transported there via Lifeflight air ambulance a day earlier.

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Family and friends sing "Happy Birthday" to Tatyanna in the living room of the Zazalak home during a party to celebrate her 10th birthday on Feb. 28, 2013.

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Christmas lights add a festive touch to Tatyanna's feeding system for her gastronomy tube during the holidays.

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Some of Tatyanna's medications sit on a tray in her room in the Pediatric Intensive Care Unit.

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Janelle visits with Tatyanna in the HSC Pediatric Intensive Care Unit late one evening.

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Janelle says good night to Tatyanna prior to leaving the Pediatric Intensive Care Unit at the Winnipeg Health Sciences Centre to get a few hours sleep. Janelle only leaves Tatyanna's side when forced to in PICU.

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A plush Stitch toy from the Disney Movie Lilo & Stitch, one of Tatyanna's favorites, sits atop a shelf alongside her

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Packing up the dream home in the country prior to moving their family of six to a smaller home in Brandon.

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Trent rubs his face and eyes while taking a moment to himself as he packs up his family's belongings for a move to a new home.

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Tatyanna lies on a bed in the kitchen of her home using a saline mask to help clear her throat and lungs. Batten disease makes it much harder for her to clear her throat on her own.

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