Category: Superhero Stories

A special, heartfelt message from Eleonora’s parents about their beloved superhero.

“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.’”

“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?”

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.”

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.”

Mason is currently 8 years old and lives in North Canton, OH.

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.”

“Since KIF1A can worsen over time, we never know what tomorrow will bring. We’re IMPATIENTLY waiting on treatment or a cure as we live our lives. That’s all I ask. We don’t want riches or a lavish life. Just a cure for him to live a long, productive, pain free life.”

“We’re so proud of Cam’s resilience! He has taken this whole journey in stride. He’s very social and loves being around his peers.”

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.”

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.”