Move through the story in order or jump to the stage you need now
Start from the diagnosis story if you want the full emotional arc, or use the stage links below when one part of the journey feels more urgent today.
Diagnosis
How early signs led to testing, uncertainty, and diagnosis, with practical family lessons from that first difficult phase.
Open stageEarly Signs
The earliest moments that made us pause and ask questions, and what those first clues taught us as parents.
Open stageThe First Year
What changed in the first year after diagnosis, including routines, appointments, and emotional adjustments at home.
Open stageLiving With Alström
Day-to-day life, routines, and how we adapted as a family to make care sustainable and less overwhelming.
Open stageWhat We Wish We Knew
What would have helped us in the earliest phase, including clear checklists, questions, and support choices.
Open stageOur Advice to Parents
Practical advice we would give parents in the same position, based on lived experience and real family decisions.
Open stageToday
Where we are now and what current life looks like, including progress, challenges, and what keeps us grounded.
Open stageMedical Journey
Appointments, hospitals, specialists, and tests over time, with practical ways to stay organized across teams.
Open stageMy journey
This section shares lived experience to support families. It does not replace clinical advice.