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.


  1. 1
    Kate on April 28, 2020

    Love you sweetie!!! Love her smile!!!

  2. 2
    Pat Malachowski on April 28, 2020

    Nora is a beautiful and dearly loved superhero! And so are her parents and grandparents. Love grows love and I believe in miracles ๐Ÿ’•

    Sending our love
    Uncle Rich and Aunt Pat

  3. 3
    The Sullivans on April 28, 2020

    You got this Nora!

  4. 4
    Susan Heinonen on April 28, 2020

    Be strong ๐Ÿ’•

  5. 5
    Jim & Barbara on April 28, 2020

    Nora is a doll and the love of our lives. Her smile and laugh are infectious. She brightens up our day every time we see her.
    The narrative above captures her well. She works so very hard at whatever she does and never gives up. We all could learn a lot from Nora.
    Love and kisses.
    Pops and Grandma

  6. 6
    Karoline on April 29, 2020


Leave a Reply

Your email address will not be published. Required fields are marked *