When Sloane was born, her parents noticed she favored looking to one side and thought it was just a simple case of mild torticollis. But after two months of no improvement, they sought out help from an occupational therapist. Sloane started therapy weekly and before they knew it, she was six months old and had moved on from neck stretches to practicing sitting. During this sitting practice, she would do what her parents call “the bobble head,” where her head would shake just like the figurine. They decided to get input from the pediatrician, but a gut feeling led her mom to seek out an opinion from a neurologist. After waiting for a neurology appointment for a month with no signs of improvement and a few more observed delays, they all agreed genetic testing would be beneficial to rule things out. The testing revealed Sloane’s diagnosis of a nano-rare disorder, KIF1A Associated Neurological Disorder, KAND for short, that can cause movement disorders, seizures, speech challenges, and vision impairments.

While this is an incredibly challenging disorder, Sloane keeps everyone around her motivated and reminds them it’s about focusing on the now and celebrating the little wins, like recently learning to army crawl!