Category: Superhero Stories

Sonny is nearly 3 years old and is from Sheffield, UK. His mom shares: “The future is so uncertain for anyone with KIF1A; that’s why it’s so important that the research continues for our son’s future.”

Caitlin is a 7-year-old from Northampton, England. Her mother says, “She makes our hearts burst with pride at her resilience.”

“What we have once enjoyed we can never lose. All that we love deeply becomes a part of us.” Helen Keller

“As Special Needs Parents, we don’t have the the power to make life “fair”, but we do have the power to make life joyful.” A Message from Matthew’s Family: Matthew is almost 4 years old and resides in Chicago, IL. Matty likes music, cake and splashing in baths!

Josie is a #relentless KIF1A warrior from Washington, D.C. who loves spending time with her family and friends.

Written in September 2019, Anouk shares her powerful journey from devastation to resilience after her daughter, Lhassa, was diagnosed with KIF1A Associated Neurological Disorder. “You have become my inspiration. My best teacher ever. A philosopher ignoring her talent. You give me the energy to fight for you and other children like you.”

Weronika is a sweet child full of energy and smiles, and one of the first children from Poland diagnosed with KIF1A Associated Neurological Disorder.

Noah is an adventurous and resilient eight-year-old from Illinois, USA, and among the first children diagnosed with KIF1A Associated Neurological Disorder.

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.”

Abby is a loving and determined two-year-old from Missouri, USA, who was diagnosed with KIF1A Associated Neurological Disorder in January 2019.

Susannah is a KIF1A superhero. Hometown: Harlem, New York Age: 6 years  Baseball All-Star Rockstar sister Never quits