Updated April 2020

Meet Ava, an almost 5 year old superhero who is a strong willed and determined little girl who never gives up and always wears a smile.

A Message from Ava’s Family:

Ava is an almost 5-year-old gearing up for kindergarten this coming fall! At a pretty young age her parents noticed her milestones were falling further and further behind so they went out on a search to figure out what was going on. She was diagnosed with KIF1A right before her 2nd birthday. Just like most families we were all in shock but decided to educate ourselves as much as we could which brought us to KIF1A.org.

KIF1A has brought Ava some struggles but she never lets them get in her way. She is a very strong willed and determined little girl who never gives up and always wears a smile. She is very loved everywhere she goes and loves to greet her peers with a “Hi, Friends!” She has stolen the heart of many amazing therapists and teachers who have changed her life significantly and we are forever grateful.

This summer you can find Ava swimming, singing, learning how to ride a tricycle, and enjoying her friends and family. We are very hopeful that amazing things are happening for our KIF1A community this year and we aim to help find a cure!

Comments

  1. 1
    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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