During STBP1 Awareness Month, we had the privilege of sharing the personal journeys of four incredible STX-ers from their parents: Inga, Annie, Lars, and Imke.
While a diagnosis of STXBP1 connects our European community, reading these personal accounts reminds us that every single child is unique, and every family’s path is completely their own. From toddlers navigating early diagnoses to adults who have spent decades looking for answers, these stories capture the incredible diversity, strength, and love within our group.
We hope you enjoyed reading these stories as much as we enjoyed sharing them with you!
Highlights from Our Stories
🇩🇰 Inga (Denmark)
Diagnosed as an infant after a devastating journey during Christmas 2020, Inga’s family knows firsthand the overwhelming weight of early STXBP1 news. Though non-verbal and facing cognitive delays, 6-year-old Inga brings endless personality to her family’s life. Even with the daily challenges, her family keeps moving forward day by day.
🇩🇪 Annie (Germany)
Almost 10 years old, Annie is full of determination, curiosity, and happiness. She loves music, playing the drums and guitar, swimming, and horseback riding. She is currently working hard on her mobility using a “LOKOMAT” robotic walking trainer, showing her incredible drive to practice and learn. Her family’s advice to new parents? “Take small steps and focus on what is needed now. Your path is hard, but it will be amply rewarding.”
🇧🇪 Lars (Belgium)
At 41 years old, Lars represents the adult generation of STX-ers. He spent nearly 40 years without an exact answer until a genetic test finally brought his parents clarity and relief. Lars is a warm, laughter-loving presence who thrives on routine, music, and helping care for farm animals like rabbits and alpacas. His story shows us that connection and joy continue across every stage of life.
🇧🇪 Imke (Belgium)
Imke, born in 2004, is a true “ray of sunshine” and a big cuddle bug who lives in a co-founded parent project with eight other young adults. Though non-verbal, she communicates in her own unique, expressive ways—moving your hand to ask you to sing, or pointing to people in her favorite photo books. Free of seizures since age two, her journey is a celebrated milestone of independence and joy.
Read Their Full Stories
Every voice strengthens our community, and we look forward to sharing even more STX-er stories in the months ahead!