Family of 4-year-old with neurological disorder hopes to raise money for robotic walker
CTV
The family of a four-year-old girl with a rare neurological disorder is hoping to raise enough money to help her get a robotic walker.
In February 2021, Amanda Burritt and her partner Jamie Shingleton had their world rocked when they found out their newborn daughter Emma was living a rare neurodegenerative disease called KIF1A associated neurological disorder (KAND).
"At the time, we they didn't really have much to tell us, because there aren't a lot of people diagnosed with it," said Burritt. "It has been very hard. It's never easy taking care of a disabled child."
Born in 2019, Emma was just six months old when her parents noticed she was falling behind in her milestones, not crawling and not sitting up without falling over.
Eventually, Emma was brought into a pediatrician before eventually checking in with a neurologist at the BC Children’s Hospital in Vancouver.
After producing little results, she would undergo genetic testing where the family found out she had the rare neurodegenerative disease.
There are only 500 people worldwide diagnosed with KAND. The disorder impacts Emma's ability to speak, see and express herself, has lowered her muscle tone and delayed her development.
"So far KAND has already taken away her eyesight. She has little-to-no vision. She cannot walk, she cannot crawl, she can't talk. She recently was also diagnosed with epilepsy," said Burritt.
