A “CHARMING and cheeky” schoolboy woke up from a nap unable to move or speak.
Jude, 10, was suffering from a serious disease affecting his nervous system – but he, his parents and several doctors had no idea.
PA/REAL LIFEJude on February 12 2023 after being induced into a coma[/caption]
Jude and his little sister Elodie on holiday in Morocco where he began experiencing subtle symptomsPA/REAL LIFE
They had all missed an array of difficult-to-spot symptoms which could have caught his condition early.
Jude, from Bobbing, Kent, spent more than 300 days in hospital, and may now be in a wheelchair for the rest of his life.
His dad Peter Keil, 43, said: “Looking back at it now, you know you can see the symptoms, but at the time, they seemed so minor.
“There were so many minor things, it was kind of like death from 1,000 paper cuts.”
The family were on holiday in Morocco in late September 2022 when they noticed that Jude, then nine, was short of breath and not snorkelling or swimming in the pool, which he usually loved.
A few days after returning home in early October, they took him to see the GP, who carried out a number of breathing tests and checked for signs of asthma.
Jude was prescribed an inhaler but this did not help and he was referred to an ear, nose and throat specialist (ENT) at Medway Maritime Hospital.
He was given the “all clear” after doctors carried out an endoscopy, where they inserted a camera into his nose and mouth, a procedure which Peter said Jude “absolutely hated”.
But another hard-to-detect symptom started to manifest itself in November 2022, which Peter and his wife Emma, 41, only spotted after rewatching videos taken at the time.
“Looking back, you can see Jude’s right arm was getting ever so slightly weaker,” Peter said.
“You just see the arm not being lifted as much.”
When Jude started using his left arm to lift his right while getting dressed, Peter knew something was wrong.
He went back to see the GP who carried out blood tests, but again, the results showed no irregularities or infections.
They were offered another ENT appointment in January which was moved to February 9, 2023, after a specialist requested to examine Jude.
But a week before the appointment, the youngster was rushed to A&E after choking on some Pringles.
“He’s normally a pretty chilled young man, but he was absolutely petrified,” Peter said.
Doctors again could not find anything wrong but stressed that he attend the ENT meeting.
He was given another endoscopy, but this time the camera revealed trembling of the epiglottis – the throat flap which stops food from going down the windpipe and into the lungs.
Doctors decided to keep Jude in overnight for observation and placed him on an oxygen saturation monitor which kept falling out of his nose.
‘Unbeknownst to me, he was dying’
“He had a terrible night’s sleep,” said Peter, a signal engineer for Transport for London.
At 9am on February 10, Jude asked his dad if he could have a sleep after calling his mother and struggling to hold the phone to his ear.
Little did Peter know, this would be the last time he would hear his son speak, at least until now.
“I said, ‘Of course you can, you’ve been up all night, you must be exhausted’,” said Peter.
“Unbeknownst to me, he wasn’t just exhausted, he was dying.
“He didn’t have the strength to get the CO2 out of his lungs.
“It was like he was suffocating with a bag over his head, except there was no bag.”
Jude had, in fact, fallen unconscious without anybody noticing until nurses arrived to check on him and realised they could not wake him.
“Straight away I realised, with the terminology they were using and the equipment that was coming into the room, it was more serious.” Peter said.
Jude was induced into a coma and transferred to the Evelina London Children’s Hospital.
“That was the start of Jude’s 311 days in hospital,” Peter added.
There are small glimmers of hope, but we can’t say it’s getting better because we just don’t know.
Peter Keil
Jude was brought out of a coma on February 13, 2023, which just happened to be his 10th birthday.
Since then, Jude’s physical condition has deteriorated to the point where today, he can barely move a finger.
“A lot of the muscle wastage is from being stuck in bed for 10 months, but also attributed to his condition,” Peter said.
“He’s lost the use of his arms completely and you have to support his head because otherwise it would hang down, so he’s in a very supportive wheelchair.”
Peter feared the condition was getting worse, but Jude regained some movement in his right little finger and his left thumb after four months.
“There are small glimmers of hope, but we can’t say it’s getting better because we just don’t know,” Peter said.
Doctors had initially suspected a brain tumour, but all scans have come back blank.
Jude’s test results have been shared with doctors around the world, including Spain, Germany and the United States.
They believe he suffers from a rare type of motor polyneuropathy – a general term used to describe diseases which affect nerves responsible for movement, such as muscular dystrophy – and possibly a lack of absorbing riboflavin (vitamin B2).
But his exact symptoms do not match any of these conditions, which suggests Jude could be the first patient in the world to develop this.
“They have carried out nerve conduction studies and they believe the signal which is produced say at the top of the shoulder, slowly depletes as it goes down the arm,” Peter said.
Despite his physical condition, Jude retains his mental capacity and has been able to continue studying with the help of an eye gaze tablet, where he can use his eyes to scroll instead of his hands.
He left the Evelina on December 13 and spent four nights on a local ward before returning home in time for Christmas.
Peter has since taken Jude ice skating at Winter Wonderland in London in his chair and to see the F1 – British Grand Prix at Silverstone, and other races at the Pineapple Pub in Waterloo.
“He can still roll his eyes – he gives you the best eye rolls in the business,” said Peter.
“It’s wonderful because we know it’s still Jude inside.
“His personality is still in there. On the outside, he’s different, but on the inside, he’s still this funny, charming, cheeky, 10-year-old boy that just wants to really run around the garden, kick a football, ride his bike and swim in the sea.”
Peter and Emma, who are afraid Jude’s condition could progress or that his little sister, Elodie, two, may also be affected, have launched a fundraiser on GoFundMe to help adapt their home and life to their son’s needs so that he can continue “loving life”.
“We want to make sure that he lives rather than just exists,” they said.
PA/REAL LIFEJude in hospital in March 2023, when he still had some movement in his arms[/caption]
The 10-year-old giving Peter a hug on Father’s Day in June 2023 while using a tilt tablePA/REAL LIFE
PA/REAL LIFEThe youngster sporting his signed McLaren F1 driver cap in hospital in April 2023, when he could still move his left arm[/caption]
PA/REAL LIFEJude and his sister Elodie after he was able to return home for Christmas[/caption]
PA/REAL LIFEDad Peter and mum Emma on a family day out with Jude and Elodie[/caption]
PA/REAL LIFEJude at his ENT appointment on February 9, 2023, where he was kept overnight[/caption]
PA/REAL LIFEPeter took his son to Silverstone thanks to Evelina London Children’s Hospital and the Make-A-Wish foundation[/caption]