Sport mad Rafi Solaiman was just 12 when he collapsed after suffering a sudden bleed on his brain. It was the start of a long three year journey for the Solaiman family whose world was turned upside down that day.
Now 16 Rafi has regained some independence, is back at school and winning medals at his new sport, race running. For six months the Sheffield Children’s Hospital was home to Rafi who celebrated his 13th birthday and Christmas there. It was also home for his mum, dad and often his three sisters Keira, Jodie and Nina. The family were able to stay at Rafi’s bedside thanks to the Sick Children’s Trust’s Treetop House.
“Rafi was never alone during the six months he was at Sheffield Children’s Hospital; this is because The Sick Children’s Trust was there for us, so we could be there for him,” says Jodie, 21, who this weekend takes part in the Leeds Colour Me Rad event at to raise money for the Sick Children’s Trust. “Because of Treetop House we could stay with Rafi right until he dropped off to sleep and we could be by his side as soon as he woke up. Even though my younger sister Nina and I were in school and college, we could visit every evening and be there to support Rafi and my parents. Treetop House was so essential to Rafi’s recovery, he must have been so frightened – but at least he had his entire family by his side.”
Rafi had been a fit and healthy 12 year old looking forward to becoming a teenager. But unbeknown to anyone he had a time bomb of blood vessels in his head which were just waiting to burst.
“It was something he was born with but you would never have knows,” says Jodie, a student at Leeds Becket Universtiy. Then one day he told his mum he felt unwell, collapsed and was rushed to hospital.
“That day is one I will never forget. I was at my friend’s house when I received a call from my Dad to say that Rafi was being rushed to Sheffield Children’s Hospital – miles away from our home in Worksop.
“Once we arrived at the hospital, we were told Rafi had suffered a haemorrhage and needed urgent brain surgery. We spoke to the surgeon who was going to operate on Rafi, that conversation is a blur as I was in complete shock, but can remember being told there was a high chance he wouldn’t survive the surgery. We had an agonising wait to see if Rafi would pull through his operation – we wanted time to stand still so wouldn’t have to face bad news- thankfully even though he suffered a cardiac arrest during surgery, he survived. The following day was very hard; we all wished it had just been a nightmare that had never happened.
“Little did we know the nightmare and uncertainty was going to last for the foreseeable future.” In the six months Rafi was in hospital he underwent numerous treatments and operations. He spent a month in intensive care and was diagnosed with ‘locked in syndrome’.
“This was scary as it meant he knew what was going on around him, but couldn’t communicate with us. The thought of this and how scared Rafi must have been feeling, haunted me. At least we could be there, talking to him, holding his hand, making sure he could hear and feel us.
“It seemed like he was getting better; he began to take a few breaths on his own, opened his eyes and even did a ‘thumbs up’ for Kiera.”
Rafi started rehabilitation, managed to sit on the edge of the bed and move his eyes. But, just one month on, he had another bleed.
“Again, we were devastated to be told he may not survive and we had another agonising wait, but Rafi fought hard and when the surgeons came out they delivered the good news - the operation had gone better than expected,” recalls Jodie.
“The following months were hard - we spent Christmas at Treetop House, Rafi’s 13th birthday at the hospital and my 18th. But it was so important for us to all be there for every step he took, from scratching his head to his first smile, and that was all possible because of The Sick Children’s Trust.”
In April 2013, Rafi started improving dramatically and he left Sheffield Children’s Hospital and The Sick Children’s Trust at the end of May 2013, before heading for further rehabilitation and the next stage of his journey, all of which his mum has written about in a moving blog which Jodie says helped her through some of the darker time.
Three years on, Rafi has some balance and co-ordination problems and his short-term memory has been hugely impacted, but he’s improving constantly.
“Although he’s still in a wheelchair he doesn’t let it hold him back,” says Jodie.
“He does horse riding, rock climbing, and swimming – he’s also recently joined the local RaceRunning team and I was told he is the fastest under 17 in the country. He’s a very happy boy who’s always laughing, smiling and a pleasure to be around.
“Rafi also often tells us how much he loves us and how much he appreciates everything we have done for him and what we do for him now. He can feed himself, speak and is able to walk for around 30 seconds unaided. He still receives physio but is back at school and in Year 11, and despite taking a year off school he’s already got a GCSE.
“Rafi and I are very close, I see him as my best friend. We were all devastated when he became so ill but I do think it’s made us all closer as I know not to take my family for granted. We are all so grateful for the support given by the hospital and The Sick Children’s Trust.”