Ava's Story

Ava is a KIF1A superhero.

  • Hometown: Grain Valley, Missouri
  • Age: 3
  • Outdoor Adventurer
  • Total Superhero

A Note From Ava’s Mom

Ava loves being outdoors! She loves swimming, going to the park, exploring on walks and spending time with her family! She is also a huge fan of anything involving music and has loved it since she was a little baby. Ava was diagnosed with KIF1A Associated Neurological Disorder (KAND) in May of 2018. Since then, Ava and her family have been advocating for the KAND community and spreading the word far and wide. Recently, our family met three other families with KAND and the connection was instant.

Despite all of Ava’s challenges she continues to amaze people. This last year has come with a lot of new changes for Ava. She wears glasses, braces and bands to help keep her toes straight while walking. Even with all of these new difficult obstacles to overcome, Ava takes them all on with pride and perseverance and never complains. She is an inspiration and our little superhero!


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    Anouk Lanouette Turgeon (Lhassa's mom) on September 1, 2019

    It seems to be a constant in these kids: they don’t complain. And I don’t think it’s a matter of having a high pain treshold! They are simply courageous and have the gift of loving life and all its wonders… So, yes, super heroes 🙂

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