Six-year-old woman left paralysed after dad and mom noticed one worrying symptom
A child has embarked on a monumental road to recovery relearning to walk after her parents sounded the alarm after spotting one worrying symptom leading to two gruelling 15-hour surgeries
A six-year-old girl was left paralysed enduring a life-saving spinal surgery and relearning to walk after her parents sounded the alarm after spotting one worrying symptom.
Despite the challenges the girl faced in a heart-warming turn of events she was able to make her brother’s Christmas wishes come true, she her brother asked Santa: “please make my sister walk again”. In June 2024, Sofia Hill, then just four-years-old, began to struggle with walking.
Her parents, Kate and Pete, noticed she was dragging her left leg, frequently falling over and stumbling – symptoms that appeared suddenly and without any apparent cause. They promptly took her to the hospital for a check-up. Assuming it was an injury to her leg, hip or knee, they consulted an orthopaedic specialist. However, no breaks, sprains or fractures were found, leading to a recommendation for Sofia to see a neurologist.
Two separate neurologists suspected cerebral palsy – a group of lifelong conditions affecting movement and coordination, caused by problems with the brain – and referred her for scans of her brain and spine.
However, instead of cerebral palsy, doctors discovered a spinal arteriovenous malformation (AVM) – a jumble of abnormal blood vessels in or around the spinal cord where arteries connect directly to veins. They urgently advised Kate and Pete to rush Sofia to the hospital immediately.
Kate, 43, who lives near Bristol said: “We had (the scan) at about four o’clock on a Monday in July 2024, and then we came back from London, went to bed, and then woke up at about 7am to a very urgent phone call from the doctor that had reviewed the scan. They said, ‘No, it’s not cerebral palsy. There’s a huge mass on her spine’. They’d been on the phone all night to Bristol Children’s Hospital, and could we take her straight into the hospital? Which we did.”
At the medical facility, Sofia received a diagnosis of hereditary haemorrhagic telangiectasia (HHT), an inherited genetic condition also referred to as Osler-Weber-Rendu syndrome, marked by the formation of AVMs. Medical professionals had uncovered multiple AVMs throughout her body, including one positioned on her spine requiring immediate surgical intervention.
Kate revealed: “She had one on her spine, she’s got at least 10 in her lungs. In terms of the one on her spine, they’re incredibly, incredibly rare – the doctors said we just haven’t seen them grow on a child’s spine before, because they normally start growing when you hit puberty, and she was four when it all first happened.”
Following that moment in July 2024, Sofia was hospitalised at Bristol Children’s Hospital, remaining there until February 2025. She underwent two gruelling 15-hour sessions of critical spinal surgery to extract the AVM from her spine, as leaving it untreated could trigger complications such as spinal cord damage, haemorrhage, severe neurological issues, or potentially death.
While the operation proved successful regarding the AVM, Kate explained the invasive treatment had devastating consequences for Sofia. “It paralysed her,” Kate said. Sofia was left with an incomplete spinal cord injury, meaning the spinal cord is not severed completely but is injured, prompting months of recovery and rehabilitation both in hospital and as an outpatient.
Her parents were aware paralysis was a potential consequence of the surgery, as medical staff had explained this to them and it was explicitly outlined on the consent documentation for the procedure, yet they were still heartbroken Sofia faced another challenging journey following the operation. “You sign a consent form, and they said quite clearly: The risks are this operation is going to paralyse your daughter,” Kate said.
“She woke up and she just couldn’t move or feel anything. And then, after a few days, she could just about wriggle a toe with monumental effort and no feeling whatsoever. So that was the first month or two months, and then it’s just been about a year of very intensive physiotherapy and rehab.”
Sofia was rendered paralysed from the waist down at the location of the AVM, losing function in her legs alongside bladder and bowel control. She initially remained in recovery at Bristol Children’s Hospital for six months, before being moved to Stoke Mandeville in Buckinghamshire, which houses a specialist spinal cord injuries unit, where she remained for six weeks.
She recently returned from another fortnight’s stay there, and Kate shared she “sort of goes in and out of Stoke Mandeville to try and keep the progress going and review her condition”. She also receives care through Neurokinex, a not-for-profit organisation offering specialist activity-based rehabilitation for individuals living with spinal cord injuries and other neurological conditions.
Kate was recommended this service by another mum at Stoke Mandeville, as well as Bristol Children’s Hospital, and decided to give it a whirl since the charity provides six complimentary sessions initially for new patients. After witnessing not only Sofia’s enjoyment of the sessions, which are designed to be entertaining for children while providing necessary rehabilitation, but also their effectiveness, she and Pete knew that “this is something we’ve got to find the money for”.
“It’s just brilliant,” Kate expressed. “They are so good for children, they try and make it fun, which for Sofia is the main thing, because she’s just turned six, she’s spent 18 months of her life doing physio, and it’s boring.
“Also, it’s really hard to get Sofia to appreciate that she’s got to do it now, because we’ve got to get these pathways firing again. If we don’t, then the chances are she’s going to spend the rest of her life in a wheelchair, and there is a significant chance of this.
“So we just need to do everything we can while she’s still young, and while, hopefully, the connections between her brain and her spine and her legs can try and regrow.”
“The brilliant thing about Neurokinex is how their trainers make each session “really fun”, which means Sofia leaves saying she’s had a brilliant time, “rather than more boring physio”. She doesn’t see the long term goals like you and I would, so we’ve to try and make it fun in the moment,” Kate explained.
Sofia visits Neurokinex twice weekly for two-hour sessions, with Kate and Pete forking out £75 per hour for the specialist treatment. “It’s not cheap at all, but you just have to think: I’ve just got to do what I can, find the money and give up everything else so that we can make this work,” Kate said.
“I don’t want to look back and think we could have done more for her.” Sofia can now manage steps using crutches, with hopes she’ll progress to walking with poles as the next milestone.
“That was an incredible moment when we saw her standing up, because she’d been laid either flat on her back or in a wheelchair for months. She added: “To see her stand, that was probably the best moment for me, when she took some steps in her frame. Now she’s on crutches, and then the next thing, hopefully one day, will be poles. That’s what we’re all aiming for.”
Sofia will live with this condition permanently, requiring routine check-ups to keep tabs on the AVMs and watch for any spread or fresh developments.
The family tackles each challenge as it comes, but after marking their first Christmas at home together since Sofia’s diagnosis, Kate is delighted that her son’s heartfelt request to Father Christmas last year is becoming reality.
“Last Christmas, my son’s Christmas list was just: Dear Santa, please, please make my sister walk again,” Kate said. “And now I’m like: ‘Look, she’s walking on her crutches, isn’t she?’ So we’ll get there,” Kate said.
For more information about Neurokinex charitable trust, which offers specialist activity-based rehabilitation for individuals with spinal cord injuries and other neurological conditions, click here.
