Jaybriel's Story

Jaybriel is a KIF1A superhero from California, USA. His family says “he is our superhero because he has the power to bring out the best in people everyday.”

Meet Team Jaybriel

Published May 2019

Watch to learn how Jaybriel’s family overcomes daily challenges that result from this rare neurodegenerative disorder and where they find their strength.

“We felt that feeling sorry is not enough. We felt we have to act. That’s what makes us stronger as a family.”

A Note From Jaybriel’s Family

Originally published in 2017

Jaybriel has the face of an angel. His laughter brings joy to everyone around him, and his smile can melt anybody’s heart. Jaybriel is a very sweet and joyful boy who loves to be cuddled and to give hugs and kisses. This same strong and happy boy was diagnosed with KIF1A just a few months ago. Even his vision difficulty won’t stop this guy from exploring the world! Getting bumps and bruises from hitting the door, wall, and floor does not deter him from crawling and cruising. Falling down multiple times a day is second nature to him already, but Jaybriel keeps getting right back up and tries to balance on his own. Jaybriel tends to fall face-first and ends up cutting his lip, scratching his chin or bruising or his forehead, but again, he stands up and tries again, talk about a determined young boy who won’t stop moving despite his movement disorder, KIF1A has nothing on this fighter!

We can only imagine what it is like not to be able to say what you want to say, but he rarely uses frustration as a way of communicating. He might have many limitations, but he is our superhero nonetheless because he has the power to bring out the best in people everyday. He is the reason why our family has the strength and willpower to advocate for people with rare genetic disorders. He made us believe we can move mountains for the people we love, especially for Jaybriel. Our boy touches so many people’s hearts. Jaybriel is such a blessing to us, and everyone loves him dearly.


  1. 1
    anouk lanouette turgeon on August 31, 2019

    This kid’s smile is irresistible ๐Ÿ™‚
    Thank you for telling your story and raising awareness.
    It was a pleasure seeing you in NYC even tough we didn’t get the opportunity to talk much. I’m sure we will next time ๐Ÿ™‚

    1. 2
      Maelene Owera on August 31, 2019

      Thank you Anouk. It’s a great pleasure to have met you at the conference. I hope to see you and Lhassa in the near future. We will not stop raising awareness and doing fundraising until cure is found. Thank you for raising awareness as well.

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