Charlie's Story. Life with a spinal cord injury and recovery from Leukaemia

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Charlie's Story. Life with a spinal cord injury and recovery from Leukaemia

Follow Charlie on his journey with a spinal cord injury and recovery from leukaemia This all changed October 17th 2016.

Our beautiful boy Charlie is now 8, he is a smiley cheeky chappy, loveable and determined which certainly helps given the challenges he lives with. Charlie, along with his twin sister Poppy were born at 30 weeks and spent much of the first year of his life in and out of hospital with various health issues. Finally at 18 months he appeared to be on the up, spending less time in hospital and was on

the verge of learning to walk. Charlie woke that morning in considerable distress, reluctant to crawl or put any weight on his legs. He was taken to hospital where an MRI confirmed the worst and changed our lives forever. Charlie had a rare vascular anomaly on his spine called an Arteriovenus Malformation (AVM). Over time this had been growing, unbeknown to anyone, until a point where it ruptured, causing a bleed on his spinal cord resulting in in paralysis from the waist down. Charlie was immediately transferred to Great Ormond Street given the rarity of his condition and he remained there for 4 weeks. Since leaving hospital, it became clear that Charlies' needs would be ongoing, with physiotherapy and equipment being key to giving him the best possible chance at a normal life. NHS physio went from 3 times a week to once a fortnight in the early days, but this has now stopped altogether. Much of the equipment we have needed couldn't be provided by the NHS, so we therefore needed to raise funds for equipment, as well as further private physio sessions and hydrotherapy to try and give Charlie the same quality of life and opportunities as his twin and older sister. Increased physiotherapy will help prolong the inevitable need for spinal surgery to correct his developing scoliosis into the future. Charlie has been wonderful at adapting without the use of his legs, but frustration is clearly setting in especially seeing his twin Poppy doing things he cannot. This is why we are so passionate about giving him as many opportunities and possibilities as we can. In additional to the challenges Charlie has faced with his paraplegia, in 2019 he was dealt a second lifechanging blow, when after a spell of recurring illness, he was diagnosed with Acute Lymphoblastic Leukaemia. Thankfully, in 2022 Charlie completed his 3 years of treatment and 'rang the bell'. Fingers crossed his prognosis remains positive from a Leukaemia perspective

In the face of adversity, he remains truly inspiration to us and those he meets. He takes every challenge life has thrown at him, does complain and continues to solider own. He is our hero and the bravest boy in the world. Thank you for taking the time to read our story

28/06/2026

Hi everyone… been a while since posting an update. Kind of happens when life get busy and feels comparatively smooth…
But in recent weeks there has been a lot going on for the family and needless to say, much of that centres around Charlies knack to make life as stressful as possible 🤦🏻‍♂️

So first up is that Charlie has recently been diagnosed as having focal seizures, a form of epilepsy. This took (and still is) some getting used to given we literally went from nothing to daily seizures. Thankfully MRI confirmed nothing more sinister underlying which was a small win, as the mind can certainly start wandering. So this is another thing to factor into his already complex life.

And just as we started to do that and get Charlie medicated which was helping, the boy then had a horrible crash on a curb whilst in his wheelchair yesterday. The result, a second femur break 🤦🏻‍♂️😭 (his last being 2021 and on the other leg)
So yesterday saw us with a blue light ambulance trip to Worthing, then another blue light trip to the Royal Alexander in Brighton where we will undergo surgery tomorrow to put rods in the break and pin it back together!

This poor boy - honestly 💔
I’m sure many of you, especially parents who follow us with children going through their own battles often think ‘why us?’ But seriously it does now feel like Charlie has had his quota of the worst luck imaginable.. and for us as parents.. every stress, every drama, every relived nightmare in a hospital setting just takes more and more of you each time 😢

08/03/2026

Nice bit of press coverage for the boy and the Topbinssmallwins campaign he is promoting for neurokinex

CHARLIE Fielding has faced more in his first ten years than most people do in a lifetime. His devastated parents wonder: “How unlucky could one child be?” after he was left paralysed from the waist…

03/02/2026

A couple more from our big day out at Worthing FC supporting neurokinex
Honary shout out to our superstar nanny Sequoia Mepham for coming to support Charlie even on her day off ⭐️

31/01/2026

Well done Charlie!! A star as always doing his part to promote the neurokinex fundraiser at Worthing FC this afternoon.. even better when he got a round of applause coming off the pitch from the crowd.. think he enjoyed that bit ☺️ Legend!

29/01/2026

Looking forward to this on Saturday!! Great that Charlie is still the face of the campaign and very excited to be working with Worthing FC

At half-time during this weekend's National League South home match against Weston-super-Mare, supporters will be treated to Neurokinex Client Charlie Fielding's Top Bins Challenge

03/01/2026

Happy new year everyone!! Hope you all had a good Christmas?
Some great news to kick the year off for us .. firstly as you can probably see, Charlie is wearing 2 trainers now, which can only mean one thing…. The cast is off!! Whoop whoop! After getting the green light yesterday this his Tibia fracture was healed it meant normality (well for us anyway) was restored.. very much looking forward to getting back to neurokinex next week.
Secondly good is the news we have done brilliantly once again with the fundraising calendar so thank you to everyone who supported there, and we are now in a position to order his new off-road tyres which will help when he is outdoors making his ride more comfortable an giving more grip when on his bike and triride. And also we have got his local hydro pool now booked once a week for him too which is great news for giving him water based exercise.. let’s hope 2026 continues with the positives 🤞🏼

20/11/2025

A day of mixed emotions…
As you can see from the photo we have one unhappy camper.
After noticing some unexplained swelling in his right leg, it obviously raised some alarm bells. With Charlie unable to feel anything in his legs, he can’t tell us what’s happening and if he is in pain. There were initially concerns Charlie could have had a deep vein thrombosis, which would have been potentially dangerous. With a routine appointment already in the diary today with Stoke Mandeville, we took the trip and they undertook an x-ray and ultrasound. Thankfully a DVT was not the issue, but instead they did discover a fracture just below his knee. So sadly, we are now in a cast for 6 wks which will take us up to Christmas which is not ideal. As always Charlie took it all in his proverbial stride, happy that he got to chose the colour of the cast, that he got a McDonalds and also one of the amazing orthotics team traded him a Charizard in Pokémon go!
He really is a star, if also the unluckiest dude I know. As a parent you never expect to find yourself saying you are grateful for a leg fracture in your child, but with other scenarios it could been, in this instance we are… Although sometimes no drama at all would be nice 😂
As a side note, the team spinal injury team at Stoke were awesome today and I can’t speak highly enough for how they fast tracked everything for us ⭐

Address

Aylesbury
HP21 8AL

Website

http://www.gofundme.com/charlie-fielding

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