In September 2023, our lives changed in a matter of hours.
Rafi had just turned seven and was in the middle of his birthday pizza party when I noticed something wasn’t right. What started as what looked like a simple tummy bug quickly became terrifying. He began passing blood and deteriorated rapidly. Within days, we were rushed to our local hospital and then transferred by emergency ambulance to Southampton General Hospital.
That was where we were told Rafi was in end stage kidney failure with severe anaemia. He had contracted a dangerous strain of E. coli which led to a rare and life-threatening condition called Haemolytic Uremic Syndrome. He was put straight onto dialysis.
Things continued to worsen. Rafi became confused and frightened, experiencing hallucinations before suffering three seizures and falling into a coma. Clots that destroyed his kidneys progressed to his brain, affecting his vital functions. His breathing became laboured, his blood pressure dropped dangerously low and a crash call was made. He was taken to intensive care.
Over the course of that night and into the next day, Rafi suffered three cardiac arrests. During the third, he was without a heartbeat for 23 minutes before being placed on ECMO life support. He also suffered a devastating hypoxic brain injury.
A world that stopped
The damage to Rafi’s body was catastrophic. For five months he could not walk, talk, eat, cough, swallow, blink, see, hear or understand the world around him. Complications continued to stack up, including a stroke, pneumonia, collapsed lungs, a pneumothorax and major endocrine imbalances.
Everything had happened so fast. When the ambulance arrived at 4am, we grabbed a pair of pyjamas and some basic toiletries, never imagining we wouldn’t return home for a year. One moment Rafi was at school and playing with friends, the next he was unresponsive in intensive care.
In the early weeks, we slept on the ward. Rafi couldn’t be left for a second. His hallucinations and fear were overwhelming, and we didn’t feel able to leave his side. We took turns trying to rest on a pull‑out bed, grabbing 20‑minute naps, barely functioning.
Because Rafi was potentially infectious, we couldn’t immediately use family accommodation. The ward staff could see how exhausted we were and explained about Ronald McDonald House. We’d heard of it before, but never once thought we would be the ones needing it.
In mid‑October, after a risk assessment, we were finally able to move into a room. We stayed for 186 days.
Walking through the door
The first time I walked into the House, I felt overwhelmed. The team were so kind and welcoming, but it represented something I wasn’t ready to face. We weren’t going home anytime soon.
That was also when we started talking about our daughter, Sienna, coming to live with us there. She had been staying with family and friends, and we needed to be together.
Being only minutes from Rafi made an enormous difference. When calls came in the middle of the night, including the night he went into cardiac arrest at 3am, we were by his side within four minutes. I cannot explain how much that closeness mattered. It gave me some sense of control in a situation where everything else felt completely out of my hands.
Finding people who understood
One of the most powerful things about staying at the House was the other families. We were incredibly lucky to form deep friendships with around five families, many of whom had been there a long time and whose children had also suffered catastrophic brain injuries.
Our neighbours in the House were also opposite us on the ward. In those early days, we would go back to our room at night and lie in silence, sometimes watching something mindlessly on the iPad. As Rafi began to show tiny signs of recovery, evenings changed. Around 10.30pm we would cook a ready meal and sit together, talking through the day and letting everything out.
What struck me most was that at Ronald McDonald House, nobody looked at us with pity. Friends and family from the outside world struggled to see Rafi because he was so unwell. I could see the sympathy in their eyes and the unspoken question of how we were coping.
At the House, everyone just got it. We were all living the same kind of nightmare and that understanding was priceless.
Moments that kept us going
Some moments will stay with me forever.
New Year’s Eve stands out. We gathered in the games room with snacks and watched the fireworks on television. It wasn’t celebratory. We were all missing our children, who should have been watching with us, but sharing that moment mattered.
Christmas was particularly emotional. On Christmas Eve, despite everything we were carrying, we wanted to make it special for the other children. We set up a projector in the quiet room, ordered a Chinese takeaway and watched Christmas films through the night.
On Christmas Day, the ward was eerily quiet. Most children had gone home on medical leave, but Rafi was far too unwell to go anywhere. It was the most surreal Christmas I’ve ever experienced. That day, Dean cooked a huge roast and offered it to families on our floor. Many accepted and we shared what warmth we could.
A place for Sienna too
Rafi was rarely well enough to come to the House, although he did visit a few times towards the end of our stay. For Sienna, though, it became home.
She helped to babysit friends’ children, practised dance in the quiet room and took part in competitions and activities. She won the Halloween art competition and was given a beautiful basket of prizes. Those little moments were such an important distraction in the middle of so much trauma.
She formed strong bonds with other siblings, and they supported each other in ways only children in that situation can. She wasn’t alone.
The House team were wonderful with her. Birthday and Christmas presents appeared outside our door. We were sometimes surprised with new board games. At Christmas, every family received new pyjamas. Small things, but when life is falling apart, they matter more than you can imagine.
What the House gave us
Staying at Ronald McDonald House Southampton removed an enormous financial burden. As two self‑employed parents with no income at the time, paying for accommodation simply wouldn’t have been possible. Honestly, I don’t know what we would have done without it.
More than anything, it allowed us to stay close to Rafi. It meant we could be there when doctors needed us, respond immediately when things changed and focus entirely on him without the added stress of travelling or worrying where we would sleep.
I truly believe that our presence helped his recovery. Even when he wasn’t aware, we believe he heard us and felt us there.
Slowly, impossibly, Rafi began to come back. After a year, he could understand who he was and who we were. Another year on, he can stand with support, he is learning to sit and, most amazingly, his voice has returned. He can communicate again.
Leaving our safe place
When the time came to leave the Southampton House, we cried. Our friends walked us out and saying goodbye was incredibly hard. It had become our safe place, our home and our new normal.
We were leaving knowing Rafi would have significant disabilities and that the future was uncertain. But we also left carrying strength drawn from the people we met and the support we received.
Rafi is still regularly in hospital, and whenever we are there, we often pop into the House to say hello. We’ve taken him back, shown him where we cooked, where we lived and taken photos by our room and in the communal spaces. It will always be part of our story.
If I could give any advice to another family walking this path, it would be this.
Take things one moment at a time. Don’t think too far ahead. Focus on being there for your child and for each other.
Lean on the people around you. The staff and other families understand in a way others simply can’t. Accept help, even if it feels hard.
Look after yourselves in small ways. Eat, rest when you can, step outside for fresh air. You can’t pour from an empty cup.
And hold onto hope. There will be moments that feel impossible, but there will also be moments of strength you never knew you had.