Get Rafi Home

Rafi’s Story.

On the 29th September 2023, we received an unexpected phone call from the school to say Rafi had been sick. We picked him up from school and he seemed quite well so we thought we had got off lightly to a mild sickness bug.

How wrong we were. 4 days later Rafi was in extreme amounts of pain, being sick and was only producing stools that contained huge amounts of blood.

After a few trips to both the GP and A&E, we were told Rafi was suffering from either constipation or gastroenteritis.

As the pain continued to increase, so did our concern. Eventually, he was taken to Frimley park by ambulance and taken straight to resus.

Rafi was in a bad way, he was in stage 4 kidney failure. The hospital couldn’t quite work out what was wrong with him and did an emergency transfer to Southampton General.

When we arrived in Southampton, we were told Raf had contracted the E-coli bug and had suffered a rare complication.

He was diagnosed with haemolytic uremic syndrome. He was taken for emergency surgery so he could start immediate dialysis.

Two days into his dialysis journey Rafi started experiencing more complications.

His eyes would tilt upwards, he was having frightening hallucinations and was incredibly distressed. This continued to build until he had two seizures and fell into a coma.

The next morning, his blood oxygen levels began dropping to dangerously low levels, struggling to breathe and was crash called into intensive care and placed on a ventilator.

The days/weeks that followed this were by far the hardest. Over Raf’s months in intensive care, he endured 28 days of dialysis, blood transfusions, Severe Brain damage to the brain stem, cortex and basal glanglia, Heart failure, 9 collapsed lungs, chest drains, 3 cardiac arrests (coding for 23 minutes) Sepsis x2, Septic shock, Ecmo life support, vasoplegia Myocarditis, Encephalopathy, Hypoxic brain injury, Pneumonia, a stroke and hydrocephalus.

Throughout this time we were told over and over again Rafs chance of survival was 0.2% and we said our goodbyes too many times to mention. The consultant told us his chances of being able to breath off the ventilator were slim and gave him “48 hours until he failed”

His life was simply “not viable” if he could not get off the ventilator as his brain had so much damage. Luckily, Raf proved the doctors wrong! He is still here.

We were eventually moved to the high dependency unit where Rafi remains now. His progress is steady, but slow.

He is making some new noises but has been left with severe disabilities.

The Amer’s are now in a position where they cannot get full funding for the extension, equipment and care that Rafi so desperately needs to come home and live with his family again.

We are raising money to build an extension on our house with an accessible bedroom and wet room complete with all medical equipment (We are also appealing to any trades who would like to volunteer their time and help with the build) The grants available simply do not cover it.

We are saving for the initial down payment on a disabled vehicle which can fit Rafi’s wheelchair in and allow him to leave the house. When the initial down payment is paid Motorbility will be able to help.

We are raising money for Rafi’s family to have time off work to be with Rafi as they learn and train how to care for him and help him with his neurological rehabilitation.

Raf’s life has been changed forever and we are fundraising to make sure he has all the equipment he needs to make his life as comfortable as possible.

Rafi will spend the 6-12 months at the hospital and in rehabilitation and we are hoping this will give us the time we need to make home accessible for him.

He can no longer talk, walk and is suffering life changing damage from a serious brain injury but we will fight for him ALL the way.