Rafi's Story

My Story

Our beautiful son, Rafi, was enjoying his pizza party for his seventh birthday when his body began to show worrying symptoms. What started as gastric issues soon progressed to passing blood and ultimately led to an emergency transfer to Southampton General Hospital. There, we were informed that Rafi was suffering from end-stage kidney failure and anaemia.

Somehow, somewhere, Rafi had ingested a dangerous strain of E. coli bacteria, which progressed to a rare complication called Haemolytic Uraemic Syndrome (HUS). He was immediately placed on dialysis. Sadly, things went from bad to worse. Rafi became confused, experienced altered consciousness and hallucinations, and suffered three seizures, which caused him to fall into a coma.

By this time, the thrombosis that had driven the destruction of his kidneys had progressed to his brain, affecting his vital functions due to brainstem involvement. By the following morning, his oxygen levels were dropping, his breathing was laboured, his blood pressure had fallen dangerously low, and he was unarousable. A crash call was made, and he was rushed to intensive care.

Despite two maximum doses of blood pressure medication, Rafi’s heart was unable to sustain him, and he suffered a cardiac arrest requiring CPR. However, things got even worse. It was not until his third cardiac arrest—when he could not be resuscitated and had coded for a full 23 minutes—that he was placed on ECMO life support. During this time, he suffered a further devastating hypoxic brain injury. At the same time, the ECMO machine that saved his life also caused him to suffer another stroke.

This cascade of organ failure robbed Rafi of the ability to walk, talk, eat, cough, swallow, gag, blink, see, hear, and even comprehend the world around him for four months. Tragic as the story already was, it went on to include a stroke, pneumonia, lung collapses, hypercalcaemia, and endocrine imbalances.

But the journey did not end there. It has been painfully slow and torturous for our family to watch our boy slowly claw his way back to us over the past two years — but that is exactly what he is doing after surviving such incalculable odds.

After a year, Rafi miraculously regained the ability to perceive the world around him. He knew who he was, recognised family and friends, and could move his limbs in response to questions.

Now, another year on, he can stand with support, he is learning to sit independently, and most importantly, his voice has returned — he can communicate again.