Emily’s Superhero Story

Emily’s Superhero Story

Emily is a relentless KIF1A superhero from North Carolina. “She has a contagious smile and loves with her whole heart. She works very hard to stay strong while waiting for a treatment or cure for KIF1A.”

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Eugenia’s Superhero Story

Eugenia’s Superhero Story

“She knows about her condition, and when she feels frustrated because of pain or because she’s unable to do something, she says ‘I hate KIF1A!’ However, she has discovered a lot of friends ‘just like her’ through this community…”

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James’ Superhero Story

James’ Superhero Story

James is a 22-year-old KIF1A superhero. His mom shares, “Treatment is so important because it can impact his quality of life as well as life itself for James and those impacted with this horrible disorder.”

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Harlin’s Superhero Story

Harlin’s Superhero Story

“The day he got his KIF1A diagnosis was the day I stopped thinking ‘I just want him to get to live a normal life’ and I started thinking ‘I just want him to live.’”

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Gino’s Superhero Story

Gino’s Superhero Story

“Gino had been diagnosed with multitude of things in the past, and we were skeptical. We went through the stages of grief when we got Gino’s diagnosis. The focus became, how can we help him live a fulfilled life?”

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Rohan’s Superhero Story

Rohan’s Superhero Story

Rohan is 5 years old and lives in the Washington, DC area. His mom says “He brightens everyone’s day and all we want is a brighter future for him because he so deserves that. He makes our hearts burst with joy and he truly is a superhero.”

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Nora’s Superhero Story

Nora’s Superhero Story

Nora is 2 years old and resides in Rhode Island. “Nora has to work so much harder to do the things many of us take for granted, but she always does so with a smile.”

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Sonia-Mae’s Superhero Story

Sonia-Mae’s Superhero Story

Sonia-Mae is a 15-year-old KIF1A superhero from England. Her wish is to one day walk unaided again. Her family says Sonia-Mae “knows this is a huge challenge and is embracing life in her wheelchair as she rebuilds the strength in her legs.”

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