Sonny’s Superhero Story

Sonny’s Superhero Story

Sonny is five 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.”

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Matthew’s Superhero Story

Matthew’s Superhero Story

“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!

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Lhassa’s Superhero Story

Lhassa’s Superhero Story

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.”

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