Boy sent home from school with ‘stomach bug’ died for 23 minutes
Rafi was left in a coma for two weeks and woke up ‘unable to do anything’
Rafi learnt to stand independently for the first time this week (Collect/PA Real Life)
The father of a boy who contracted a “lone case” and rare strain of E.coli aged seven that saw him rushed to hospital where he “essentially died for 23 minutes” said his son was given “incalculable” odds of survival, but has made an “incredible” recovery. Dean Amer, 37, a guitar teacher living in Bracknell in Berkshire, is the father of Rafi, now nine, who was sent home from school in September 2023 after vomiting.
This led to cramps that progressively worsened over two weeks but doctors initially misdiagnosed Rafi with constipation and a stomach bug, during two separate medical interventions. But when Dean noticed blood in Rafi’s stool, he called an ambulance and his son was rushed to hospital, where his condition worsened to stage four kidney failure, multiple seizures, a brain injury, and three cardiac arrests.
Doctors managed to resuscitate Rafi and he was placed on life support, where Dean said his family – including his wife, Laura Amer, 37, and daughter, Sienna, 14 – were “urged” to say their goodbyes. Rafi was diagnosed with Shiga-toxin producing E.coli-haemolytic uraemic syndrome (STEC-HUS), which is a rare condition that affects the kidneys and is most common among very young children under five, according to Kidney Research UK.
Rafi was put on an ECMO machine and dialysis (Collect/PA Real Life)
After two weeks, Rafi regained consciousness but Dean said his son had “lost the ability to do everything and anything” so his recovery has been “very slow”. Now, almost three years on, Dean said his son is “standing independently” and he can talk, eat and sit up again.
Dean told PA Real Life: “Rafi is the most intelligent boy – so witty and so funny… he has a resilience that I could only dream to have. As we keep working, the future will essentially be bright for him and he should be able to do whatever he wants to do, within reason.
“We can get all of his basic functions back because we won’t stop until he does. But he will be happy, and I know that’s the main thing,” he added.
The only symptom Rafi initially presented with was a single episode of vomiting, for which he was sent home from school. Dean said he thought it was a “sick bug” their son had caught, and he seemed “right as rain” very shortly afterwards.
Rafi’s symptoms started with vomiting (Collect/PA Real Life)
But within days, Rafi started experiencing stomach cramps that became “incredibly severe” so Dean had a GP appointment over the phone and it was suggested he might have constipation. Rafi’s condition did not improve after around nine days so, after Dean noticed his son “wincing in pain” while trying to sleep, the parents took their son to A&E and were sent home with a diagnosis of a stomach bug.
Around the 14-day mark, Dean said he noticed blood in Rafi’s stool one night so he called an ambulance and paramedics rushed him to hospital, where his son’s condition rapidly deteriorated and it was discovered he had stage four kidney failure. Within hours, Rafi was “blue lighted” to a renal specialist at Southampton General Hospital.
“Emotionally, we were all over the place,” Dean said. “It was horrible. He was in a lot of pain by then.”
Rafi was placed on life support (Collect/PA Real Life)
Dean said it was “shocking” to see his son placed on dialysis and then for Rafi to receive his STEC-HUS diagnosis days later. Within that time, Dean said Rafi started experiencing neurological symptoms of “extreme aggressiveness and behavioural changes”, as well as seizures and being unable to maintain consciousness.
Dean said: “Rafi couldn’t wake up, so there was a crash cart called and all of a sudden, multiple people rushed into the room. I watched them all rushing down to intensive care… that’s when it began to get very horrific.”
Despite a “whole host of medication”, Dean said doctors could not keep Rafi’s heart rate stable so he “ended up having two mini cardiac arrests” and a third major one that led to a lack of oxygen, brain damage, and needing to be resuscitated.
He was then placed on an ECMO machine to keep his heart pumping. Rafi was in a coma for two weeks, until “we had a call one morning to say his eyes had opened and so we rushed down, ready to go and talk to him”, Dean said.
Rafi is now nine years old (Collect/PA Real Life)
“It was actually what I would say is one stage worse than death, and that is the vegetative state, where essentially enough of the brain stem survives that you can open your eyes and sleep, but you have no conscious awareness of the world around you.”
Dean said there was “no response” from Rafi for about six months, then he slowly started producing urine, which “showed that there was some healing beginning to happen”, while his heart rate improved too and he was taken off the ECMO machine.
Dean said Rafi is the ‘happiest’ boy (Collect/PA Real Life)
He added: “Slowly, more and more responses started to come about and it began with blinking and eye tracking. I would test him over and over again to see his state of consciousness, so I would put an iPad in front of him.
“We’d be talking to him, and I’d show him pictures of his sister, and I’d say, ‘Go and follow Sienna’, and I’d move the iPad up. One day, his eyes went up… and we had the beginnings of life again.”
Dean believes Rafi is ‘very happy’ with where he is in his recovery (Collect/PA Real Life)
Rafi was in a high-dependency unit for a total of nine months so Dean, Laura, and Sienna moved into a Ronald McDonald House in Southampton for a total of 186 nights, so they could be close by instead of having to travel 55 miles from Berkshire.
Dean added: “We could see his window from our window in the hotel, and so all the traveling stopped.”
Rafi then moved to a brain rehabilitation institution for three months, before he was able to come home by the end of 2024. His current condition means that he can talk, eat, sit up, and has now learnt to stand independently, as of this week.
Rafi and his sister Sienna (Collect/PA Real Life)
“Rafi is the happiest, most content boy you’ll ever meet,” Dean said. “He’s very happy with where he is, and that’s what makes him so unique and inspirational. He has a resilience that I could only dream to have.”
Pixie Lott, in partnership with McDonald’s, recorded I’m Gonna Be (79 Miles), to highlight the average distance families supported by Ronald McDonald House UK will travel to be with their seriously ill or injured child in hospital.
