Category: Superhero Stories

A message from London’s family in New York, USA: London is our beautiful and sassy little 7 year old girl with a BIG personality. London was diagnosed with KIF1A in 2022. It has been a journey and still is but nothing stops London from letting her personality shine. She’s definitely the Queen Bee! London loves…

A message from Athena’s family in California, USA: Athena is 6 years old. She was diagnosed at the age of 5 when I requested genetic testing for her after speaking to her orthopedic surgeon. We kept thinking we were missing something. Something wasn’t adding up. Her ortho doctor and I decided that we should speak…

“Su risa contagia de alegría en su alrededor. (Her laughter spreads joy all around her.)”

“She was diagnosed at one month old, via genetic testing, and only given and expectancy of ‘6months to 4yrs, but expect it to be closer to 18months or less’–we were devastated.”

“We are beyond proud of how resilient Emma is and continues to be. Despite everything working against her, she is the happiest little girl that can brighten up any room with just her smile.”

“We dream of being able to find in Italy the knowledge and trials that are available in the USA today. For this reason we decided to fund a KIF1A association also in Italy, in collaboration with other Italian parents.”

“He enjoys making others laugh with his quick wit and his smile is contagious.  He loves being with family & friends.”

“Pauline is the joy of the family. She was the angel who came to bring us even closer together.”

“He really keeps us on our toes but he always has a smile on his face no matter the challenges he’s faced with.”

“We really hope that someday there will be a treatment that can help stop the progression of the symptoms, and give Elena and us more years to enjoy together.”

“We love her just as she is and could never imagine not having her with us. She completes our family in a quirky kind of way. We won’t ever stop fighting to get her well. I believe in miracles, and she is one.”