A father has described the harrowing moment his family was told their young son would not survive a rare E. coli condition. Dean Amer, father of Rafi Amer, recounted the ordeal that began in September 2023 when his then seven-year-old son was sent home from school after vomiting.
Misdiagnosis and Deterioration
The symptoms quickly escalated to severe cramps. Over two weeks, doctors initially misdiagnosed Rafi with constipation and a stomach bug. It was only after Dean discovered blood in his son's stool that Rafi was rushed to hospital. There, his condition deteriorated rapidly, leading to stage four kidney failure, multiple seizures, a brain injury, and three cardiac arrests. Medical staff urged the family to prepare for the worst.
Diagnosis and Life Support
Rafi was diagnosed with Shiga-toxin producing E. coli-haemolytic uraemic syndrome (STEC-HUS), a rare kidney condition. He was placed on life support, including an ECMO machine, and remained in a coma for two weeks. When he regained consciousness, he was in a vegetative state, unable to respond for about six months. Slowly, he began to show signs of awareness, such as blinking and eye tracking, marking the start of his long recovery.
Current Progress
Now nine years old, nearly three years after his illness, Rafi can talk, eat, sit up, and has recently learned to stand independently. During his nine-month hospital stay, his family moved into a Ronald McDonald House for 186 nights to be near him. Dean described Rafi as the 'happiest' boy despite his ordeal.
