The story of Eppie, and Daniel's treatment at Great Ormond Street Hospital

When Daniel’s parents found out he had to have major brain surgery at Great Ormond Street Hospital (GOSH), they knew they had to find a way of explaining what was going to happen.

“It was in August 2013 that we nervously made our way to GOSH for our first appointment with Dr Aylett and her team. Our son Daniel, who was five-years old at the time, has a port wine birth mark over part of his face and his body, suffers from epilepsy and has mild cerebal palsy, all symptoms of Sturge Weber syndrome (SWS).

“After the appointment, we were told that Daniel had all the classic symptoms of SWS but didn't have the condition.

"Daniel's seizures are complicated, every one different from the last, but each needing medical intervention to stop them. One of his most memorable seizures went on for more than three hours until it was stopped.

"Dr Aylett decided that surgery might be an option so, after testing, Daniel underwent major brain surgery in June 2016. It was the most terrifying day in the hospital that we had.”

“When we consented to Daniel having surgery, we also had to think of a way of telling him what was going to happen.

“One of Daniel's favourite films is Disney's Inside Out. We had the idea of creating a 'baddie' character (which his Dad, Simon, named Eppie) to help Daniel picture what was going on inside his head.

“Our wonderful friends Howard and Kathy  kindly brought Eppie to life for us. It turned out to be the perfect way of helping our son through a very traumatic time in his young life.”

“These are my friends: Joy (my favourite), Anger, Fear, Disgust, Sadness and BingBong. They live inside our heads, helping us with our emotions and feelings.

“Then there is Eppie, he is NOT my friend. He doesn't live in everyone's head, just a few people like me. He caused a lot of problems, he made me really poorly and made me have to visit the hospital a lot. The other characters don't like him at all and wanted him to leave my head.

“That's why I went to GOSH, so the surgeons could open a 'door' in my head and get rid of him. I hope they sealed up the door really tightly because I never want him to come back. Hopefully we'll never see Eppie again!

“So, they did it! Mr Tisdall and Mr Tahir took Eppie out of my head!

“They told mummy and daddy that they got Eppie and everything went really well. It took them over eight hours, naughty Eppie, but he's gone now – phew!

“My head hurt a lot and it made me cry, but the nurses gave me some lovely medicine called morphine which soon took the pain away. I had a big bandage around my head – Daddy said I looked like Mr Bump!"

“After my operation I was taken to the high-dependency unit on Koala Ward. I shared a room with three other children who had also had an Eppie taken out. That horrible little character has caused too much trouble, we were all glad to see the back of him!

“Getting out of bed for the first time really scared me but I really needed a wee so I had no choice! I was very sleepy all the time – the nurses said I was just sleeping myself better. I took small steps to getting better every day. sometimes I didn't want to talk or play, I just wanted a hug, but mummy, daddy, my bear Lotso (and peanut M&Ms) helped me smile again!

“My best day ever? 21 June 2016, at 8am, when I was discharged and allowed to go home. I HAD BEATEN EPPIE!"

Daniel is currently seizure-free and is happily settled back in school. He enjoys being home with his mum, dad and sisters Rosie and Pollie.