A father has described the harrowing ordeal of his son, who at seven years old contracted a rare strain of E.coli, leading to a near-fatal hospitalisation where he 'essentially died for 23 minutes'. Dean Amer, 37, recounted his son Rafi's survival odds as 'incalculable' but praised his 'incredible' recovery.
Initial Symptoms and Misdiagnosis
Rafi, now nine, was sent home from school in September 2023 after vomiting, which escalated into severe cramps over two weeks. Initially, doctors misdiagnosed his condition as constipation and a stomach bug during two separate medical interventions. However, when Mr Amer, a guitar teacher from Bracknell, Berkshire, discovered blood in Rafi's stool, an ambulance was called.
Rapid Deterioration
Rafi was rushed to hospital, where his condition rapidly deteriorated, leading to stage four kidney failure, multiple seizures, a brain injury, and three cardiac arrests. Doctors managed to resuscitate him, placing him on life support. Mr Amer revealed that his family, including wife Laura, 37, and daughter Sienna, 14, were 'urged' to say their goodbyes.
Diagnosis and Treatment
Rafi was eventually diagnosed with Shiga-toxin producing E.coli-haemolytic uraemic syndrome (STEC-HUS), a rare kidney condition predominantly affecting children under five, according to Kidney Research UK. After two weeks, Rafi regained consciousness, but his father noted he had 'lost the ability to do everything and anything,' making his recovery 'very slow.'
Long Road to Recovery
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 Onset of Illness
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. 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.
Critical Care
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.' 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.
Coma and Vegetative State
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. '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. 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.'
Family Support and Ongoing Recovery
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 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.'
