A father recently shared his harrowing ordeal after doctors initially misdiagnosed his seven-year-old son’s condition as constipation, when in fact he was suffering from a rare strain of E.coli leading to kidney failure and a coma. Dean Amer, a 37-year-old guitar teacher from Bracknell, Berkshire, recounted how his son, Rafi, began experiencing vomiting after being sent home from school in September 2023. Despite two visits to the doctor, Rafi was wrongly diagnosed with constipation and a stomach bug.
After noticing blood in Rafi’s stool, Dean called for an ambulance, and Rafi was swiftly taken to the hospital where he was diagnosed with stage four kidney failure, multiple seizures, a brain injury, and three cardiac arrests. Rafi was resuscitated by doctors and put on life support, with his family being advised to prepare for the worst.
Subsequently, Rafi was diagnosed with a rare condition called Shiga-toxin producing E.coli-haemolytic uraemic syndrome (STEC-HUS), typically affecting young children under five. Dean described the emotional turmoil his family endured during Rafi’s treatment, including his son being placed in a coma and needing an ECMO artificial lung machine to assist his heart.
Rafi remained unresponsive for about six months until signs of improvement emerged, such as the production of urine and slight movements indicating consciousness. After spending nine months in a high-dependency unit, the family relocated to a Ronald McDonald House near the hospital. Rafi then underwent brain rehabilitation before finally returning home by the end of 2024, although his recovery has been gradual due to the impact of his illness.
Despite the challenges, Rafi has made significant progress and can now talk, eat, sit up, and stand independently. Dean commended his son’s resilience and positivity, highlighting Rafi’s incredible journey on their Facebook page called “Rafi’s Recovery.”
In a separate development, pop star Pixie Lott collaborated with McDonald’s on a new single, “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 the hospital.
