A father shared the harrowing experience of his seven-year-old son being initially diagnosed with constipation but later found to have a rare strain of E.coli, leading to a coma and kidney failure. Dean Amer, a guitar teacher from Bracknell, recounted how his son, Rafi, was sent home from school after vomiting and experienced severe cramps for two weeks. Despite two misdiagnoses by doctors, when blood appeared in Rafi’s stool, Dean called an ambulance, leading to the discovery of stage four kidney failure, multiple seizures, a brain injury, and three cardiac arrests. Rafi was resuscitated and put on life support, with the family being advised to prepare for the worst.
Rafi was diagnosed with STEC-HUS, a rare kidney condition most common in children under five. Dean described the emotional turmoil of seeing his son undergo dialysis and being informed of the STEC-HUS diagnosis. Rafi’s condition deteriorated to the point where he had neurological symptoms necessitating a coma and the use of an ECMO artificial lung machine to maintain heart function.
After months of no response, Rafi showed signs of improvement by producing urine, indicating some healing. Slowly, he began to regain consciousness, initially with blinking and eye tracking. The family stayed close to Rafi during his nine-month stay in a high-dependency unit, moving to a Ronald McDonald House in Southampton for 186 nights. Rafi then spent three months in a brain rehabilitation facility before returning home at the end of 2024, where his recovery, though slow, has seen progress. He can now talk, eat, sit up, stand independently, and is described by Dean as a remarkably resilient and cheerful boy.
The family created a Facebook page called “Rafi’s Recovery” to share Rafi’s journey with others. In a related initiative, pop star Pixie Lott collaborated with McDonald’s to release a single titled ‘I’m Gonna Be (79 Miles)’ to raise awareness of the distances families supported by Ronald McDonald House UK travel to be with their critically ill children in hospitals.
