“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!


  1. 1
    Fernando Rosales Collignon on April 28, 2020

    She is really a superhero!!
    She has the best attitude to live!
    An example of God’s love!
    We love her!!

    1. 2
      Mary Paz on April 28, 2020

      Princhipesa!👑 you are a real sunshine!! 🙅🏻‍♀️🙅🏻‍♀️🙅🏻‍♀️🥰😍

    2. 3
      Eugenia on April 28, 2020

      Gracias tío te quiero muchísimos

  2. 4
    Liliana Abarca on April 28, 2020

    Eugenia is one of the most amazing people I had the chance to teach! She was always eager to learn new things, never afraid of anything!! Her beautiful shining eyes where looking for fun all the time! Miss you Eugenia!

  3. 5
    Ana LIlia Solórzano Contreras on April 28, 2020

    Eugenia una niña que conocí. Hoy una señorita. Como paciente : muy disciplinada ,fuerte y obediente GUERRERA. Sus preguntas son directas ,como sus respuestas. Gran corazón… sincero .recuerdo cuando me dijo.. YA TE QUIERO Ana. …que bendición tenerla …una sonrisa limpia colo su Alma. . Te quiero mucho Eugenia

  4. 6
    Brenda Schultz on April 28, 2020

    She is the happy girl !!!
    We love her very much !!!!

  5. 7
    Barbara Collignon on April 28, 2020

    Como abuela de Eugenia, he vivido incontables momentos con ella.
    Algunos hermosos, otros dolorosos, pero todos marcados por una sonrisa de Eugenia a pesar de cualquier circunstancia. Es una guerrera, un ejemplo de valentía y alegría, es increíble verla siempre sobreponerse a todo con su carácter alegre y su enorme corazón.
    Te quiero muchísimo Eugenia!!!!

  6. 8
    Sherri on April 28, 2020

    We love you Eugenia! I always enjoyed talking with you and hearing all the latest news about everyone from you. Huge hugs from our family to yours!

  7. 9
    Elia fernandez del valle on April 29, 2020

    Eugenia eres como un sol de la mañana…tu presencia irradia luz y un calor que envuelve al que te mira,..eres como un trinar de pajaritos al comensar el día y al caer la noche…eres un canto de alegría,
    Eres brillante¡ y tu mirada dulce y penetrante.
    Como una gran bodega, guardas la memoria de aquellos que a tu lado
    Han dejado en tu corazon …lo que sea¡¡
    Como una reportera investigas la vida de quien pasa un tiempo contigo…y sigues su rastro como algo prioritario,
    Como se te quiere¡¡¡ será que El AMOR
    Y LA ALEGRÍA han hecho una alianza contigo¡¡¡¡
    Eres una leccion de vida para todos.
    Es un privilegio conocerte y pasar un tiempo contigo.
    Te llevo en mi corazon…VECINA cercana y lejana (por horarios diferentes)
    Te admiro y te quiero¡¡¡¡

  8. 10
    Karoline on April 29, 2020

    Love the Oreo part❤😍
    You make your sisters special😊👍

  9. 11
    Karoline on April 29, 2020

    Love the Oreo part❤
    You make your sisters even more special!😍👍

  10. 12
    Gabi Stump on April 29, 2020

    I have been a PT for over 25 years now and along this time, I’ve had few, very few patients that have actually taught me far more than what I could ever share with them of my knowledge.
    Eugenia is one of them!
    She has taught me to laugh during stressful moments; she has shown me, that we have to give our best in any given situation and….. She does it smiling; and most important of all, cherish life, don’t take it personally nor seriously… It is what it is… So make the best out of it.
    Ever since we started therapy until now, it is my honor to be her PT.

    Eres lo máximo, Eugenia!
    Agradezco a la vida porque nuestros caminos se cruzaron!!

  11. 13
    Eugenia on May 2, 2020

    Hola, Elia cómo estás muchísimas gracias por el mensaje me encanto eres súper buena conmigo te quiero muchísimo

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