Mario’s Superhero Story

Mario’s Superhero Story

Meet Mario, a four-year-old KIF1A superhero from Spain. His mom recounts their journey to finding a diagnosis and says, “His genetic imperfection defines some of his characteristics but it does not hide him as a person.”

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Jim’s Superhero Story

Jim’s Superhero Story

Jim is currently 37 years old and lives in Long Island, NY. It took over 30 years for Jim’s family to get his diagnosis: “The results revealed what could not have been known in 1981–that Jim did not have cerebral palsy and instead had an incredibly rare genetic disorder called KIF1A.”

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Gia’s Superhero Story

Gia’s Superhero Story

Gia is a 1-year-old superhero, fighting KIF1A in Scottsdale, Arizona. Her family hopes to keep their little superhero comfortable and happy and they pray that her future is full of love.

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Rylan’s Superhero Story

Rylan’s Superhero Story

Rylan is 5 years old and lives in Denver, Colorado. His mom says “He loves and is loved fiercely. It is critical to find treatment to continue Rylan’s growth. He has already taught us more about life than I could have imagined and he has a lot more teaching to do in his lifetime.”

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Mikolaj’s Superhero Story

Mikolaj’s Superhero Story

Mikolaj is 5 years old and lives in Poland. His mom says, “The scariest thing of all is the degenerative nature of this condition … and even this kind of SUPERHERO can’t cope with that. So, our best wish is a dream cure to stop the clock and give him the most amazing chance for…

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Sutton’s Superhero Story

Sutton’s Superhero Story

Sutton is 4 years old and lives in Tennessee. Her mom says “We hope that one day there will be treatment so that she can learn to speak or use her legs. For now, we will continue enjoying our sweet girl while fighting for more answers.”

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Sonny’s Superhero Story

Sonny’s Superhero Story

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.”

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