Rafi's Story

... by Jackie Macadam (aka Fudgefase)

“I remember it so clearly,” says Blipper Jackie18.

“One minute my healthy, active 12-year-old son, Rafi (Blipper Rafstar99) was at home, complaining about a banging headache – and the next minute he was unconscious.

“Little did we know it would be 5 months before our precious child would utter another word.

“He was rushed to hospital and diagnosed with having an arteriovenous malformation – basically an abnormality in the vessels of the brain. No one knew he had it. Unfortunately, it meant that these vessels were weak and liable to burst, and that’s exactly what had happened.”

It was the beginning of a nightmare for the family.

Rafi was taken from the local hospital straight to Sheffield Children’s Hospital because he needed an operation to stop the bleeding in his brain and release the pressure inside his skull.

The family were told it was highly likely their young son wouldn’t survive.

“I was sitting with my two older daughters as they told us that. I don’t think any of us will ever forget that moment,” says Jackie.

Against the odds, Rafi DID survive the surgery. A few days later his eyes opened, but his family could see no recognition in them. He’d had a tracheotomy (a tube inserted into his throat below his voicebox so that he could breathe) so he was unable to speak. The hospital told the family that the front of his brain was undamaged, so chances were he was aware of what was going on around him, but he couldn’t respond. They gave him the diagnosis of ‘Locked-In Syndrome’.

“I remember thinking that he must have been so frightened. He was fed through a tube that went down his nose into his stomach and there was another tube coming out of his head to drain cerebrospinal fluid.

“I didn’t leave the hospital for 5 weeks. The whole family just revolved around Rafi, spending time with him and trying to make sure he was comfortable.

“After a month he hadn’t made much progress but did seem to be becoming a little more aware when one morning I came down to find that there was fluid over his pillow and the doctors suspected he’d had another bleed.

“A scan confirmed the terrible news and again, my precious son was sent for emergency brain surgery. Again we were told to prepare ourselves, that the chances he would survive were very slim. I remember crying because I believed that if he pulled through again, he would just have no quality of life. I broke down in front of the ward manager and confesses I wasn’t sure that I wanted my poor child to survive...”

Again though, Rafi DID pull through and the family waited to see how he would come out of it.

In February 2013, Rafi began communicating by blinking. It was a huge step and massively encouraging.

In April he progressed again – beginning to move his head, nodding and shaking it so that he could let people know what he wanted. And later the same month, he spoke again. It was faint but it was speech.

The family treasured every piece of progress Rafi made.

They boosted the family like nothing else. His school friends visited him regularly.

By May, Rafi was deemed fit to be transferred to a specialist brain injury rehabilitation unit in Tadworth, Surrey.

“I went with him,” said Jackie. His dad and sisters visited often.

“By now Rafi had found his voice, and it was often an angry one. He would repeat over and over that nothing was real, it was all a bad dream and that he would wake up back in his bed at home. It was heartbreaking to listen to. I would try to orientate him but sometimes he would turn on me, accusing me of being an imposter, not his real mum. He was diagnosed with Capgras Syndrome, where someone with a brain injury perceives people they recognise around them as imposters.

“He was on medication for depression and psychosis and had undergone a complete physical and personality change. There were, thankfully, times where he was very loving and would tell us how much he loved us, over and over again.

“He was given the diagnosis of post-traumatic amnesia, meaning that he was unable to ‘lay down’ short-term memories. Each day he’d wake up with no recollection of the day before, or where he was. His memories of home were still very strong and he resented being incapacitated in the hospital.

“His anger made him reluctant to cooperate with his therapists and he seldom engaged with the sessions that were arranged for him.

“Eventually, in September that year, he was sent home, earlier than expected. He was becoming so traumatised at being away from home that he was starting to threaten to kill himself.

“Once home he cheered up. He was able to walk with a frame and a helper and immediately began to cooperate with his therapists. His old personality started to return.

“He went back to school and with the support of his peer group, he managed to get 6 GCEs. It was a terrific achievement, and one he has built on in the years after his emergency.

“Five years on he’s at college. He still needs a frame to get around and he uses a wheelchair if there are long distances involved. He’s a happy, healthy young man, making the most of his life.

“He’s even found a sport that he loves – racerunning, where athletes race against each other while being supported by a frame to help them balance.

“He represented England at the CP world games in Barcelona in August, winning gold medals in the 200m and the 800m and a silver in the 100m!

“He’s also been selected for the British para-athletics team for the European Championships in Berlin this month. I could never have dreamed of this for him.”

Jackie says that Blipfoto had hooked her before Rafi fell ill. Naturally it took something of a back seat during his crisis, but once rehab started, Jackie found solace in recording his progress and reconnecting with the rest of the Blip Community.

“I knew the Blip Community was friendly and supportive so I felt confident my Blips would be received in the right way.

“My first blip must have drawn a lot of attention as I got a huge response. I blipped when there was something positive to report and tried not to dwell on the negative.

“It became very important to me. Some people who commented were very wise and helped me a lot; others prayed for Rafi and though I am not especially religious, just the knowledge that people were thinking about him really helped.

“I received a bundle of Blip goodies from Blip Central and was thrilled when one of my blips was chosen to be in an exhibition in Edinburgh!

“At some point, when Rafi came home, he looked at my journal. He looked at it for a long time. He turned to me and said, ‘you’ve been through a lot, haven’t you?

“It became very important to him, because he had no memory of the first few months of his hospitalization.

“My blip friends have travelled the journey with us – and many now follow Rafi, as he continues his journey on his own Blipblog.

“His short-term memory is still poor, so blipping helps him record what he’s been doing.”

Rafi continues to go from strength to strength. The latest thing he’s up to is modelling! He’s also had two TV appearances. It’s all go for Rafi!”

PS The photograph shows Rafi shortly before flying off to the European Championships currently taking place in Berlin.