A father has revealed how doctors initially told him his seven-year-old son was simply constipated, only for the boy to be diagnosed with a rare form of E.coli that led to a coma and kidney failure.
Misdiagnosis and Rapid Decline
Dean Amer, 37, a guitar teacher from Bracknell, Berkshire, said his son Rafi, now nine, was sent home from school in September 2023 after vomiting. Over the following two weeks, Rafi suffered severe cramps, but doctors dismissed it as constipation and a stomach bug during two separate appointments.
When Dean noticed blood in Rafi's stool, he called an ambulance. Rafi was rushed to hospital and diagnosed with stage four kidney failure, multiple seizures, a brain injury, and three cardiac arrests. Doctors resuscitated him and placed him on life support. Dean said his family—including wife Laura, 37, and daughter Sienna, 14—were urged to say their goodbyes.
Rare Condition: STEC-HUS
Rafi was diagnosed with Shiga-toxin producing E.coli-haemolytic uraemic syndrome (STEC-HUS), a rare condition affecting the kidneys, most common in children under five, according to Kidney Research UK.
"Emotionally, we were all over the place," Dean said. "It was horrible. He was in a lot of pain." He described the shock of seeing his son on dialysis and receiving the STEC-HUS diagnosis days later.
After neurological symptoms including extreme aggressiveness and behavioural changes, Rafi was placed in a coma for two weeks and put on an ECMO artificial lung machine to keep his heart pumping.
Slow Recovery
For about six months, there was no response from Rafi until he slowly began producing urine, indicating healing. His heart also started to improve. "Slowly, more and more responses started to come about, beginning with blinking and eye tracking," Dean said. He tested Rafi's consciousness by showing pictures on an iPad. "One day, his eyes went up... and we had the beginnings of life again."
Rafi spent nine months in a high-dependency unit. Dean, Laura, and Sienna moved into a Ronald McDonald House in Southampton for 186 nights to be near him. He then spent three months at a brain rehabilitation institution before returning home at the end of 2024.
When he regained consciousness, Rafi had lost the ability to do everything. His recovery has been slow, but as of this week, he can talk, eat, sit up, and stand independently. Dean describes him as "the happiest, most content boy you'll ever meet."
The family has set up a Facebook page called Rafi's Recovery to document his journey. Pop star Pixie Lott has recorded a single 'I'm Gonna Be (79 Miles)' in partnership with McDonald's to highlight the average distance families travel to be with seriously ill children in hospital.
