A little boy who was paralysed by a rare and potentially fatal polio-style virus has made an incredible recovery and managed to walk out of the hospital.
His mum Karen Waterworth, from Surrey, feared her son Josh, now seven, would not survive the enterovirus, which left his entire spinal cord inflamed and caused severe breathing difficulties.
Little Josh was just two-and-a-half when the virus struck in 2016, but after a year in hospital – several weeks of which were on life support – he finally walked out of the children’s brain injury unit.
And his mum says that thanks to the rehab he has been having since 2019 at Neurokinex in Gatwick, West Sussex – a specialist neurological centre dedicated to helping people with paralysis – in the last two weeks, he has even started playing football and scoring goals.
‘When Josh got ill, overnight our whole lives were turned upside down – it was terrifying,’ says Karen.
‘Now, all of us just feel so grateful he’s made this recovery. Watching him walk out of the front gates of the hospital when he finally came home was more emotional than when we got married.
‘Now he’s thrilled to be playing football with his pals and says he wants to be a footballer one day. Seeing him on the pitch sometimes, I still have to pinch myself to believe he’s here.’
Karen says her youngest son first showed signs of being unwell in July 2016 after spending the day with friends.
‘He had a bit of a respiratory virus and a slight fever,’ she says. ‘But especially with it being our third child, I wasn’t too worried. I thought we’d give him some Calpol and he’d be fine.’
As he was wheezing, she took him to the GP’s, where she was told to keep an eye on him – but, on the Saturday, after a family day out at nearby Gomshall Mill, he lost the use of his right arm.
‘It just became completely paralysed,’ Karen remembers. ‘We got home and all of a sudden, he couldn’t move his right arm. I remember holding out toys to him and he couldn’t take them.’
At A&E at Epsom General Hospital, doctors suspected Josh had ‘pulled elbow’ – a condition in children where a growing arm bone slips out of place.
The family were told to come back to hospital on the Monday morning. By that time, Josh had deteriorated severely.
‘We took him out of his buggy and he was shaking all over. He couldn’t stand,’ says Karen.
He was whisked in an ambulance at St George’s Hospital in Tooting, south west London, where her underwent tests and a spinal MRI. Josh was eventually diagnosed with acute flaccid myelitis (AFM), brought on by a virus, which is not dissimilar to polio, called enterovirus D68.
AFM is an extremely rare neurological condition found in children under 18, according to Great Ormond Street Children’s Hospital (GOSH), and it occurs in outbreaks every few years and affects the spinal cord – often following a mild viral infection, especially from an enterovirus.
The US-based Centers for Disease Control have only identified 600 children with the condition to date worldwide. AFM is a newly discovered disease, so little is known about it, but GOSH say only a very small number of children recover completely with no lasting effects.
‘There was inflammation the whole length of his spine,’ says Karen.
‘It was so shocking – it wasn’t just a section. It was from the very top, at his brain stem, all the way down his spine.
‘Very quickly, he was on life support. He couldn’t breathe, he couldn’t even hold his head up. He was completely paralysed. All he could do was move his left fingers.’
Karen and Ian could only sit helplessly by Josh’s bedside, willing his body to fight back against the virus and its effects.
‘After a week they said we could hold him and he was just like a rag doll,’ she says. ‘It was absolutely shocking.
‘They call it a polio-like virus, and it does what polio used to do. It’s very rare.’
Josh was in the paediatric intensive care unit (PICU) for six months, and he was on life support for around three months.
Fearing the worst, Karen and Ian were warned that he might not be able to recover.
‘There was definitely a sense that we could lose him,’ she says. ‘Seeing him that unwell was terrifying. We were clinging onto hope. It was like living in a nightmare.’
A plasma exchange – where part of the blood is replaced with that of a donor’s – made a big difference to Josh’s condition. He started to show more signs of recovery.
Coming off the life support machine was another step forward and, in December 2016, Karen and Ian secured a place at The Children’s Trust in Tadworth, Surrey, a specialist rehab unit for brain injuries.
But days before he was due to be admitted, Josh came down with another virus and was unable to leave.
‘That was a real low point. I remember just walking in the street and sobbing, not knowing when he’d ever leave the hospital,’ says Karen.
Luckily, Josh recovered from the new virus in January, moved to the new unit and threw himself into physio and occupational therapy – slowly regaining motion, including relearning how to walk, as his strength gradually returned.
In July 2017 Josh was able to walk out of the unit.
‘When he left hospital, he walked out of the gates. It was more emotional than the day we got married,’ says Karen.
‘We had about 40 or 50 people from The Children’s Trust gathered and cheering for him.
‘They really helped him, and he wouldn’t be where he is today without all of them – as well as the amazing team at St George’s PICU.’
Returning home was tough. Josh needed monitoring by an adult all day and throughout the night as he slept, so specialist nurses were provided to support the family
When Covid-19 hit, meaning the nightly nurses stopped coming, Karen and Ian spent an entire year monitoring Josh’s sleep using a baby monitor – waking up multiple times as it beeped when he rolled over.
But, to their delight, just weeks ago, he finally slept unaided for the first time.
‘He just said one day, “It’s too much air!. We started him on just every other night and gradually he came off using a ventilator altogether,’ says Karen.
Karen says the family are very close, and that Josh’s brothers James and Ryan are very protective of him.
‘He does get frustrated sometimes, but we always remind him how far he has come,’ she says.
Karen is also part of a Facebook group for other families affected by AFM and wants to warn other parents to watch out for the signs.
‘Very sadly, there are other children, who haven’t made as full a recovery as Josh,’ she adds.
‘Parents should watch out for any unexpected muscle weakness in the arms and legs – which can come on very suddenly.
‘If telling our story can help someone else, it will have been worthwhile.’
According to Great Ormond Street Children’s Hospital (GOSH), AFM symptoms include sudden asymmetrical weakness in the arms or legs (affecting sides of the body differently); limbs becoming floppy; spinal reflexes disappearing; muscle weakness in the face, i.e. droopy eyelids; difficulty breathing, swallowing or toilet control problems; and occasional numbness or tingling. For more information visit the GOSH website.
To learn more about Neurokinex visit their website, and to learn more about Scinergise visit www.scinergise.org.uk.
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