Blog

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.”

Edward is 9 years old and lives in Victoria, Australia.

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…

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.”

Breck is a busy 11-year-old, who lives in Billings, Montana. His hobbies include trains, basketball and Special Olympics gymnastics.

“He is our warrior who never fails to light up a room and put a smile on the face of every person he meets.”

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.”

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.