A mother shares the journey of her daughter’s paralysis following a crucial surgery. Kate Hill and her husband Pete noticed their six-year-old daughter, Sofia, struggling to walk and dragging her leg, prompting concern. Doctors diagnosed Sofia with a rare genetic disorder called spinal arteriovenous malformation (AVM), urging immediate hospitalization.
Initially suspected to have cerebral palsy, Sofia was later found to have hereditary haemorrhagic telangiectasia (HHT), which led to multiple AVMs in her body, including a critical one on her spine requiring urgent intervention. Despite understanding the risks, Kate and Pete decided on the life-saving surgery for Sofia, knowing it could result in paralysis.
The surgery, performed in July 2024, was successful but left Sofia with an incomplete spinal cord injury, necessitating extensive recovery and rehabilitation. Sofia, now paralyzed from the waist down, underwent intensive physiotherapy and rehab. With access to specialized care through Neurokinex, Sofia’s progress in regaining mobility is promising, although she faces lifelong challenges.
Kate is determined to provide Sofia with the best possible care, emphasizing the importance of early intervention for her daughter’s recovery. Sofia can now walk with crutches, with the hope of eventually using poles. Despite the ongoing battle, the family remains optimistic, cherishing milestones like celebrating Christmas together and witnessing Sofia’s progress towards independent mobility.