Overview
- Sofia Hill’s walking difficulties began suddenly in June 2024, prompting initial assessments for an orthopaedic injury and suspected cerebral palsy before scans revealed a mass on her spine.
- Doctors diagnosed hereditary haemorrhagic telangiectasia with multiple arteriovenous malformations, including an exceptionally rare spinal lesion requiring urgent intervention.
- Two operations at Bristol Children’s Hospital removed the spinal AVM with the known risk of paralysis, leaving Sofia with an incomplete spinal cord injury and loss of bladder and bowel function.
- Her rehabilitation has included six months of inpatient recovery, a specialist stay at Stoke Mandeville, and ongoing Neurokinex sessions twice weekly that her parents fund at £75 per hour.
- Now aged six, she has returned to Year One at school, can take steps using crutches, recently stood unaided for a nativity photo, and will undergo regular monitoring for other AVMs.