Our Stories
Behind every FOXG1 diagnosis is a person, a family and a story.
Every FOXG1 journey is different. These are the experiences of families living with FOXG1 — the challenges they’ve faced, the moments they’ve celebrated, and the things they’ve learned along the way.
We hope these stories help families feel less alone, raise awareness of FOXG1 and give a glimpse into the people behind the diagnosis.
Living with uncertainty: mental health and FOXG1 syndrome
In this episode of the Rareminds podcast, Emma Murphy, whose son has FOXG1 syndrome, speaks with Rebecca Hargreaves, Senior Counsellor at Rareminds, about the emotional challenges of living with the possibility of ongoing health crises. Together, they explore how to navigate uncertainty, manage anxiety and find ways to cope without becoming overwhelmed or emotionally depleted.
Stuart's Story
For years, Stuart’s family searched for an explanation for his developmental difficulties, seizures, speech difficulties and unusual movements. From his first concerns as a baby to years of investigations and specialist appointments, the journey to a diagnosis was a long one.
It wasn’t until Stuart was in his teens, after many years of uncertainty, that genetic testing finally identified a FOXG1 missense variant.
Today, Stuart is a happy young man who loves football, travelling, musical theatre and getting out and about. He still needs considerable support in his everyday life, but his family are keen to share his story to help other families feel less alone.
