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.”
A Message from Jaybriel’s Family
April 2020
Jaybriel Nathanael Owera is our angel. He was diagnosed with KIF1A Associated Neurological Disorder (KAND) just after turning 2 years of age on May 9, 2017. That day is one of the saddest days of our lives. KAND affected the daily life of Jaybriel by having spastic paraplegia, intellectual disability, cognitive impairment, optic nerve atrophy, developmental delays, and issues with coordination, muscle tone, and speech.
Jaybriel frequently falls from his unsteady gait and tip-toeing style of walking. He has poor vision and can bump into things. He is limited with his words, so he is having difficulty expressing himself. Jaybriel is our tiny superhero because since this diagnosis, he has not stopped working so hard and he always gives his very best in everything he does. He never ceases to amaze us because every single thing he does, small or big, easy or hard, he does it with a smile on his face. He may be delayed but he makes progress.
His steps to improvement may be slow and small but he moves forward. He does not let falls, multiple bruises, and bumps on his head slow him down. He keeps trying and he never gives up. This diagnosis is very scary for us because it is progressive and degenerative. His future is unknown, but there is one thing we are sure of, that is that every step he makes gives us strength and hope.
He makes us so proud because he is a very relentless and determined young boy. Our hopes for our superhero’s future are for him to be healthy and to continue to be strong to face the challenges in life. Treatment for this serious and life-threatening disorder is important to us because that means Jaybriel can continue to be the superhero that he is. He may be our superhero but he just wants to be like an ordinary child with full of love and happiness in his heart.
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.”
This kid’s smile is irresistible 🙂
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 🙂
#careuntilcure
#relentless
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.