We are an independent group of parents and carers of children and young people with special educational needs and/or disabilities (SEND) in Hull.
Our aim is to improve services for our children and young people by ensuring that families’ voices are heard by planners and decision-makers.
A heartfelt reflection from parents navigating the uncertainty of their young son's undiagnosed genetic condition. This piece shares the emotional weight of not knowing what the future holds, the daily challenges of complex care, and the beauty found in small moments of joy, love, and resilience.