“She knows about her condition, and when she feels frustrated because of pain or because she’s unable to do something, she says ‘I hate KIF1A!’ However, she has discovered a lot of friends ‘just like her’ through this community…”
A Message from Eugenia’s Family:
Eugenia, like every other teenage girl, has good days and bad days. The difference lies in the fact that no matter how hard her day was, she always asks about how other people’s day went, and when asked about hers she’ll say “de maravilla!”, everything went great. Because beyond KIF1A, she’s a kind, compassionate, and determined young woman, who was only made stronger by her condition. Don’t get me wrong, like any girl her age, Eugenia still experiences mood swings, complains about schoolwork, and argues with her sisters; for her, everything is just a tiny bit harder.
Eugenia loves socializing; I bet she knows every single person at school, complete with the names of all their family members and their favorite hobby. She genuinely cares about everyone she meets. I guess her huge heart is just another symptom of KIF1A. Eugenia likes to say she is the white oreo filling, as she is squeezed between an older and a younger sister; without her, they’d be just two common chocolate cookies. Eugenia brings love and uniqueness to our family every day, complete with her willingness to help and an everlasting reason to smile.
She knows about her condition, and when she feels frustrated because of pain or because she’s unable to do something, she says “I hate KIF1A!” However, she has discovered a lot of friends “just like her” through this community; she enjoys looking at Facebook pictures of Ellie, Susannah, Parker, Emily, Max, Mario, Noah… our KIF1A family from around the world!
If there is something this girl has taught me, it is to enjoy life as it is!
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