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.