“We are beyond proud of how resilient Emma is and continues to be. Despite everything working against her, she is the happiest little girl that can brighten up any room with just her smile.”
A message from Emma’s family in Calgary, Alberta, Canada:
Emma, born in June 2019, was a happy and healthy baby. As she started nearing her 1st birthday we noticed she had fallen behind in her milestones. We immediately self referred her to early intervention to try and help catch her up to her peers. At her 1 year check up, her paediatrician agreed that something wasn’t right and was also concerned about the lack of awareness to her environment. That is when our medical/disability journey started. After countless specialist visits, tests and procedures we finally figured out that Emma had optic nerve atrophy from her MRI findings. There was no clear reasons why, which led us to genetic testing. 8 months later we got the most devastating results that Emma had an ultra rare genetic disease called KAND (KIF1A Associated Neurological Disorder).
KAND has impacted Emma in many ways. At almost 5 years old, it has already caused significant damage to her developing brain causing her to be blind, non verbal, non mobile and more recently epileptic.
We are beyond proud of how resilient Emma is and continues to be. Despite everything working against her she is the happiest little girl that can brighten up any room with just her smile. We fight everyday against KAND and pray that one day soon there is a cure.
