doctors<\/a> discovered a spinal arteriovenous malformation (AVM) \u2013 a tangle of abnormal blood vessels in or around the spinal cord where arteries connect directly to veins \u2013 and advised Kate and Pete to rush her to hospital immediately.<\/p>\n\u201cWe had (the scan) at about four o\u2019clock 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,\u201d 43-year-old Kate, who lives near Bristol, told PA Real Life.<\/p>\n
\u201cThey said, \u2018No, it\u2019s not cerebral palsy. There\u2019s a huge mass on her spine\u2019. They\u2019d been on the phone all night to Bristol Children\u2019s Hospital, and could we take her straight into the hospital? Which we did.\u201d<\/p>\n
At hospital, Sofia was diagnosed with hereditary haemorrhagic telangiectasia (HHT), an inherited genetic disorder also known as Osler-Weber-Rendu syndrome characterised by the development of AVMs. Doctors had discovered multiple AVMs across her body, including one on her spine that needed urgent surgery.<\/p>\n
\u201cShe had one on her spine, she\u2019s got at least 10 in her lungs,\u201d explained Kate, who also shares two sons \u2013 Ralph, 12 and Arlo, nine \u2013 with her husband, Pete.<\/p>\n
\u201cIn terms of the one on her spine, they\u2019re incredibly, incredibly rare \u2013 the doctors said we just haven\u2019t seen them grow on a child\u2019s spine before, because they normally start growing when you hit puberty, and she was four when it all first happened.<\/p>\n
\u201cSo I don\u2019t think anyone expected it to be that diagnosis.\u201d<\/p>\n
From that point in July 2024, Sofia was admitted into Bristol Children\u2019s Hospital, where she stayed until February 2025.<\/p>\n
She had two 15-hour days of life-saving spinal surgery to remove the AVM on her spine, as leaving it could cause complications like spinal cord damage, haemorrhage, serious neurological problems, or even death.<\/p>\n
While the operation was successful in terms of the AVM, Kate said the invasive procedure had life-altering consequences for Sofia.<\/p>\n
\u201cIt paralysed her.\u201d<\/p>\n
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.<\/p>\n
Her parents knew paralysis was a risk of the surgery, as it was discussed with them by doctors and clearly detailed on the consent form for the procedure, but were nonetheless devastated that Sofia had another battle ahead of her after the operation.<\/p>\n
\u201cYou sign a consent form, and they said quite clearly: The risks are this operation is going to paralyse your daughter,\u201d Kate said.<\/p>\n
\u201cBut the alternative was she was going to die if we didn\u2019t do the surgery. So it wasn\u2019t kind of a decision\u2026 We went into it knowing there was a risk, but you obviously hope for the best.<\/p>\n
\u201cShe woke up and she just couldn\u2019t 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\u2019s just been about a year of very intensive physiotherapy and rehab.\u201d<\/p>\n
Sofia was left paralysed from the waist down from the site of the AVM, losing use of her legs as well as bladder and bowel function. She first spent six months in recovery at Bristol Children\u2019s Hospital, before being transferred to Stoke Mandeville in Buckinghamshire, which has a specialist spinal cord injuries unit, where she spent six weeks.<\/p>\n
She recently came home from another two-week stay there, and Kate explained that she \u201csort of goes in and out of Stoke Mandeville to try and keep the progress going and review her condition\u201d.<\/p>\n
She also accesses care through Neurokinex, a not-for-profit organisation that provides specialist activity-based rehabilitation for people living with spinal cord injury and other neurological conditions.<\/p>\n
Kate was recommended the service by another mum at Stoke Mandeville, as well as by Bristol Children\u2019s Hospital, and decided to give it a go since the charity offers six free sessions initially for new patients.<\/p>\n
After seeing not only how much Sofia loved the sessions, which are designed to be fun for children as well as providing the necessary rehabilitation, as well as how effective they seemed to be, she and Pete knew that \u201cthis is something we\u2019ve got to find the money for\u201d.<\/p>\n
\u201cIt\u2019s just brilliant,\u201d she said.<\/p>\n
\u201cThey are so good for children, they try and make it fun, which for Sofia is the main thing, because she\u2019s just turned six, she\u2019s spent 18 months of her life doing physio, and it\u2019s boring.<\/p>\n
\u201cAlso, it\u2019s really hard to get Sofia to appreciate that she\u2019s got to do it now, because we\u2019ve got to get these pathways firing again. If we don\u2019t, then the chances are she\u2019s going to spend the rest of her life in a wheelchair, and there is a significant chance of this.<\/p>\n
\u201cSo we just need to do everything we can while she\u2019s still young, and while, hopefully, the connections between her brain and her spine and her legs can try and regrow.\u201d<\/p>\n
Because the trainers at Neurokinex make the sessions \u201creally fun\u201d, Kate said Sofia comes away saying she\u2019s had a great time, \u201crather than more boring physio\u201d.<\/p>\n
\u201cShe doesn\u2019t see the long term goals like you and I would, so we\u2019ve to try and make it fun in the moment,\u201d Kate explained.<\/p>\n
Sofia attends Neurokinex twice a week, for two-hour sessions, and Kate and Pete pay \u00a375 per hour for the service.<\/p>\n
\u201cIt\u2019s not cheap at all, but you just have to think: I\u2019ve just got to do what I can, find the money and give up everything else so that we can make this work,\u201d Kate said.<\/p>\n
\u201cI don\u2019t want to look back and think we could have done more for her.\u201d<\/p>\n
Now, Sofia can take steps on crutches, and it\u2019s hoped that she\u2019ll be able to walk using poles, which is the next goal.<\/p>\n
\u201cThat was an incredible moment when we saw her standing up, because she\u2019d been laid either flat on her back or in a wheelchair for months,\u201d Kate said.<\/p>\n
\u201cTo see her stand, that was probably the best moment for me, when she took some steps in her frame. Now she\u2019s on crutches, and then the next thing, hopefully one day, will be poles. That\u2019s what we\u2019re all aiming for.\u201d<\/p>\n
Sofia is also back at school in Year One and is doing \u201cincredibly well\u201d, thanks to the school\u2019s \u201cbrilliant\u201d support and the amazing teaching staff at Bristol Children\u2019s Hospital, Kate said.<\/p>\n
\u201cShe just did a nativity, and she stood on the stage for about 15 seconds on her own, while we took a photo. So that was amazing.\u201d<\/p>\n
The condition will affect Sofia for the rest of her life, and she\u2019ll need to go for regular checks to monitor the AVMs and check for spread or new growths.<\/p>\n
For the family, it\u2019s one battle at a time, but having just celebrated Christmas at home as a family for the first time after Sofia\u2019s diagnosis, Kate is thrilled that her son\u2019s wish to Santa last year is coming true.<\/p>\n
\u201cLast Christmas, my son\u2019s Christmas list was just: Dear Santa, please, please make my sister walk again,\u201d she said.<\/p>\n
\u201cAnd now I\u2019m like: \u2018Look, she\u2019s walking on her crutches, isn\u2019t she?\u2019 So we\u2019ll get there.\u201d<\/p>\n
To find out more about Neurokinex charitable trust, which provides specialist activity-based rehabilitation for people living with spinal cord injury and other neurological conditions, visit www.neurokinex.org<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"Sofia Hill was four when she had the complicated spinal surgery that left her unable to feel or…\n","protected":false},"author":2,"featured_media":231329,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[103,61,60,37825],"class_list":{"0":"post-231328","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-health","9":"tag-ie","10":"tag-ireland","11":"tag-real-life"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/231328","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=231328"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/231328\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/231329"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=231328"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=231328"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=231328"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
![\"PA](\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/01\/0_01KE91HE184W99SGCNP9VM4H09.jpg\")
PA REAL LIFE: Sofia after her life-saving operation that left her paralysed. (Image: Collect\/PA Real Life)<\/p>\n