‘Our active boy can no longer walk or talk – and doctors don’t know why’

A 13-year-old boy whose rare nerve condition has never been diagnosed is now receiving palliative care after a doctor warned he may have just 12 months to live.

Jude Keil’s father, Peter Keil, 46, from Kent, said the recent news was “painful” to hear.

The London Underground system support engineer first noticed his “happy-go-lucky” son struggling to swallow food while on a family holiday in September 2022, aged nine.

Over the course of five months, Peter said he took Jude to the GP up to five times due to a couple of choking incidents, before a scheduled endoscopy led to a doctor noticing “something unusual” about the way his mouth was moving. The next day, Jude suddenly lost consciousness and went into respiratory arrest, which led to a four-day coma.

Despite “countless” tests over three years in the search for a definitive diagnosis, and a total of 311 days spent at Ronald McDonald House Evelina in London, Peter said his family still has no answers for the root cause of Jude’s “deteriorating” condition.

But Peter said the trajectory of Jude’s decline means his son has gone from a “very active young man” to losing all of his movement and now being under palliative care.

Peter said: “Jude has had a lot of medical interventions, but inside he’s just completely locked-in now.

“In the latest chat we had with his neuroconsultant last week, she said they’ve made a promise to keep looking until they exhaust all their avenues.

“But there are discussions of (Jude only having) 12 months to live… We just don’t know how long he will hold out for.”

Before Jude’s symptoms first started four years ago, Peter described his son as a “lovely little boy” who enjoyed “trying anything and everything”.

“He was a fantastic swimmer and cyclist,” Peter said.

“He has dyslexia and dyspraxia, so he struggled to read and write, but there was nothing really untoward about his health over the years.”

The first time Peter noticed something was wrong was when nine-year-old Jude choked on a piece of squid while on a family holiday in September 2022.

“We stood him up, gave him a pat on the back and we just carried on as normal,” Peter said.

On that same holiday, Jude struggled to hold his breath while diving underwater, causing Peter to remark that he “wasn’t very confident” in the pool, which was unlike him.

Peter, along with his wife, Emma, 44, assumed it might just be a flu or a bug their son picked up on the plane, but his symptoms progressed to breathing difficulties too.

A further choking incident with a snack in November led to Jude being “really frightened”, so Peter said they went “back and forth” to their family GP to investigate up to five times.

“I can categorically say (doctors) never shrugged it off,” Peter said.

“They were just testing everything because they didn’t want to leave any stone unturned.”

Jude had blood and urine tests, lung capacity tests and doctors had theories about muscular problems before he was referred to an ear, nose and throat doctor.

During a resulting endoscopy at Medway Maritime Hospital in Kent on February 8 2022, Peter said a doctor noticed Jude’s epiglottis – the flap that covers the windpipe while swallowing – was “trembling” and there was saliva “foaming up”, so they asked to keep Jude in overnight.

The next day, Peter said his son felt “really rough” so he asked his father if he could have a sleep, which would be the last time Jude would ever speak.

Minutes later, a consultant “purely by luck” happened to check in and notice Jude’s condition had turned critical.

“As the consultant moved Jude’s arm… it just dropped to the bed,” Peter said.

“Straight away, they hit the crash bell and a team of doctors and nurses came running in.”

Jude’s oxygen saturation was at 77 per cent – anything under 92 per cent can be a medical emergency, according to NHS England – and he fell into respiratory arrest and was blue-lighted to Evelina London Children’s Hospital.

By February 13, which was Jude’s 10th birthday, Peter said his son woke up after being in a coma for four days with “sensors all over him”, and he was “very confused and quite lethargic”.

“He knew he was non-verbal straight away… but he just accepted it,” Peter said.

“He ended up asking for an iPad and he zoomed in on a picture of him in our snug with a birthday card he had received the previous year and pointed at himself.

“It was his way of asking if he had missed his birthday… he was just so happy that he hadn’t.”

Within two days, the family were given access to a room at Ronald McDonald House Evelina so that they did not have to make the two-and-a-half-hour “costly” journey from Kent to London to visit their son in hospital.

They stayed for a total of 311 nights and Peter said it became “a home away from home” for the family, including their daughter, Elodie, five.

“(It was) a place where we could rest, think, cry, laugh and simply be parents,” Peter said.

Jude initially spent 16 weeks in intensive care until his mobility declined so much that he started having to use a wheelchair, which Peter said his son “wasn’t very accepting of” at first.

In the years since, Peter said Jude’s condition has “worsened” to the point where he cannot move and needs a permanent ventilator to breathe.

But Jude still does not have a diagnosis.

“I think they got the book out and decided to go through a whole list to tick everything off, but they’ve never stopped,” Peter said.

“They’ve looked for viral or bacterial infections, autoimmune conditions, they’ve done tissue, nerve and muscular biopsies… and we’ve had the most advanced genetic screenings.”

Jude is now under palliative care after Peter said he had a meeting earlier this month with a doctor who warned his son might only have 12 months left to live.

Peter said: “We will make sure that he’s living, rather than existing, as that’s one thing we’ve done since day one.”

Peter is sharing Jude’s story because he wants to raise awareness for Ronald McDonald House and McHappy Day, which raised more than £3 million for charity during its inaugural fundraising day on September 26 this year.

Peter said: “I will talk until I run out of breath about the charity because without them, we would have been absolutely lost.”

To find out more, visit the Ronald McDonald House UK website.