Nora is 2 years old and resides in Rhode Island. “Nora has to work so much harder to do the things many of us take for granted, but she always does so with a smile.”
A Message from Nora’s Family:
Nora is our superhero! Her smile and laugh are contagious, and you cannot help but love her. She brings immense joy to our lives every single day! Nora loves to sing (Twinkle, Twinkle Little Star is her favorite song) and she gives the best cuddles. Our journey began in December 2018 when Nora was 10 months old, and after months of specialist appointments, one MRI, multiple rounds of bloodwork and two genetic tests, we received Nora’s diagnosis of KIF1A Associated Neurological Disorder in November 2019.
Nora receives weekly Occupational Therapy, Physical Therapy and Speech Therapy to help work on her gross and fine motor skills, hypotonia and speech challenges. We are amazed at her determination, persistence and resilience, and it seems every week, sometimes every day, she is showing us new tricks. Just recently, Nora started transitioning from her belly to a sit position all by herself, initiating peek-a-boo and feeding herself an applesauce pouch! Nora has to work so much harder to do the things many of us take for granted, but she always does so with a smile.