A father shared his ordeal of doctors initially diagnosing his seven-year-old son with constipation, only to discover he had a rare strain of E.coli causing kidney failure and coma. Dean Amer, 37, residing in Bracknell, Berkshire, recounted how his son, Rafi, now nine, was sent home from school after vomiting and experienced severe cramps for two weeks. Despite two medical consultations diagnosing constipation and a stomach bug, the situation worsened with the appearance of blood in Rafi’s stool, prompting Dean to call for urgent medical assistance.
Upon admission to the hospital, Rafi was diagnosed with stage four kidney failure, multiple seizures, a brain injury, and three cardiac arrests. Despite the critical condition, doctors successfully resuscitated Rafi and placed him on life support. The family, including Dean’s wife Laura and daughter Sienna, were advised to prepare for the worst. Rafi’s condition was identified as Shiga-toxin producing E.coli-haemolytic uraemic syndrome (STEC-HUS), a rare kidney disorder prevalent in very young children.
Dean detailed the emotional rollercoaster they endured, witnessing Rafi undergo dialysis and eventually being diagnosed with STEC-HUS. Rafi’s neurological symptoms led to him being induced into a coma and supported by an ECMO artificial lung machine. After six months of no response, Rafi showed signs of improvement by producing urine, indicating healing progress. His gradual recovery included regaining consciousness and developing basic motor functions.
Following a nine-month stay in a high-dependency unit, Rafi transitioned to a brain rehabilitation facility before returning home at the end of 2024. Despite losing many abilities initially, Rafi has made significant progress in his recovery, now able to talk, eat, sit up, and stand independently. Dean praised his son’s resilience and highlighted Rafi’s positive attitude during his recovery journey.
The family established a Facebook page called “Rafi’s Recovery” to share updates on Rafi’s progress. In a separate initiative, pop star Pixie Lott collaborated with McDonald’s to release a single titled ‘I’m Gonna Be (79 Miles)’, aiming to raise awareness of the distances families travel to be with their critically ill children in hospitals supported by Ronald McDonald House UK.