A father shared the harrowing experience of his seven-year-old son being initially misdiagnosed with constipation, only to discover he had a rare strain of E.coli leading to kidney failure and coma. Dean Amer, a guitar instructor from Bracknell, recalled how Rafi was sent home from school after vomiting, followed by a two-week ordeal of excruciating cramps. Despite two doctor visits diagnosing constipation and a stomach bug, when blood appeared in Rafi’s stool, Dean called an ambulance that rushed Rafi to the hospital.
Upon arrival, Rafi was diagnosed with stage four kidney failure, experiencing multiple seizures, a brain injury, and three cardiac arrests. Despite the grim situation, doctors managed to revive Rafi, who was then placed on life support. The family, including Dean’s wife Laura and daughter Sienna, were advised to prepare for the worst.
Rafi was later 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 as Rafi underwent treatment, including being placed in a coma for two weeks and relying on an ECMO artificial lung machine to sustain his heart.
After showing signs of improvement months later, Rafi spent nine months in a high-dependency unit, where his family stayed close by at a Ronald McDonald House in Southampton for nearly 200 nights. Following a three-month stint at a brain rehabilitation facility, Rafi finally returned home by the end of 2024, albeit facing a slow recovery due to losing many abilities during his illness.
As of the latest update, Rafi has made significant progress, now able to talk, eat, sit up, and even stand independently. Dean expressed admiration for Rafi’s resilience and positive demeanor throughout the challenging journey. The family has created a Facebook page named “Rafi’s Recovery” to share updates on Rafi’s progress.
In a separate development, pop star Pixie Lott has collaborated with McDonald’s to release a new 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.