A mother shared the story of her daughter’s paralysis following critical surgery after observing her struggle to walk and drag her leg. Kate Hill and her husband, Pete, noticed unusual walking difficulties in their six-year-old daughter, Sofia, who frequently stumbled and found it challenging to walk properly.
Concerned, they took Sofia to the hospital in June 2024, suspecting a leg, hip, or knee injury. However, medical professionals diagnosed Sofia with a rare genetic condition called spinal arteriovenous malformation (AVM) – an abnormal tangle of blood vessels near the spinal cord where arteries directly connect to veins. Urged by doctors, Kate and Pete rushed Sofia to the hospital for immediate treatment.
Initially, cerebral palsy was suspected by two neurologists, leading to brain and spine scans. The scans revealed a significant mass on Sofia’s spine, indicating hereditary haemorrhagic telangiectasia (HHT), a genetic disorder causing the development of AVMs. Sofia had multiple AVMs in her body, including one on her spine requiring urgent surgical intervention.
Facing the decision of risky life-saving surgery for Sofia, Kate and Pete understood the potential consequences, including the risk of paralysis, as explained by medical professionals. However, the alternative of not proceeding with the surgery meant a life-threatening situation for Sofia.
Following the surgery in July 2024, Sofia was admitted to Bristol Children’s Hospital, where she underwent extensive 15-hour spinal surgeries. Although the operation was successful, Sofia was left paralyzed with an incomplete spinal cord injury, necessitating extensive rehabilitation.
Sofia’s recovery journey included intensive physiotherapy and rehabilitation to regain movement and sensation. Her parents sought additional specialized care from Neurokinex, a nonprofit organization offering tailored rehabilitation for spinal cord injuries and neurological conditions.
Despite the challenges, Sofia has made progress, learning to walk with crutches and aiming to transition to walking with poles in the future. Regular monitoring for AVMs and ongoing care will be crucial for Sofia’s lifelong management of her condition.
Kate expressed gratitude for the support received and the progress Sofia has made, emphasizing the family’s determination to provide the best care for their daughter. Celebrating recent milestones, including a Christmas together as a family, Kate reflected on her son’s heartfelt wish for Sofia’s recovery, now witnessing her gradual steps towards mobility.