Kiara is a KIF1A superhero.

  • Hometown: Farmington, ME
  • Monster Truck Driver
  • Total ​Superhero

A Note from Kiara’s Family

Originally published April 2017

Kiara is definitely a true Mainer and loves the outdoors. She always wants to be outside, likes to swim, play with her baby brother and older step brother. Kiara is a Grandpa’s girl (Papa as Kiara says) and loves to play trucks, just like her dad. Kiara is a true leader already. She has produced the most #WeNeedAMouse videos on the internet and is responsible for raising funds that are vital to treating other children with genetic disorders.

Kiara also loves camping. KIF1A kids have lots of trouble walking, especially on uneven ground, but this kindergartner is tougher than any grizzly bear, so a little hill won’t stop her. A five year veteran of rare and undiagnosed disease, last month Kiara was finally diagnosed. Kiara has KIF1A-related disorder and is leading the charge to get all of the KIF1A kids a mouse model so scientists can get to work. With superheroes like Kiara, discovery is just around the corner. The girl rocks.


  1. 1
    Cindy Ross on May 3, 2019

    She is a super Hero to my family! Great job Kiara keep up the fight Grammy loves you

  2. 2
    Lisa Gomez on August 23, 2019

    Love this little fighter!!!!πŸ™‡β€β™€οΈπŸ™‡β€β™€οΈπŸ™‡β€β™€οΈ
    She’s a Super Hero in my book!!!!πŸ¦Έβ€β™€οΈπŸ¦Έβ€β™€οΈπŸ¦Έβ€β™€οΈ
    Love you to the moon and back Kiara!!!!πŸŒ›πŸŒ›πŸŒ›β€πŸ€—β€πŸ€—πŸ¦„πŸ¦‹πŸ™πŸ‘Ό
    Great Aunt Lisa!!!!!!!

  3. 3
    Nivedita Mangale on January 30, 2020

    Your story is a success story that i was looking for.
    My name is nivedita. i got by Nu.
    My son is diagnosed with KIF1A and i want to know more about ur superhero and what u do to make sure he is doing great..

    one mother to another.. please reply back..

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