A nine-year-old schoolboy will celebrate his first healthy Christmas – after a rare condition saw his brain fall into his neck.
Kai Diawne suffered from a rare condition which led to his brain slipping into his spine.
He suffered from the illness for years – doctors think he could have been born with it, but this year he had nine operations to cure it, spending around 20 hours in surgery.
Now he is the healthiest he has ever been and is excited about his first Christmas with his head intact.
Kai Diawne
Kai had an operation to remove a bone at the back of his skull, relieving pressure on his brain, in January this year.
But a number of complications saw him rushed into theatre nine times during his six-week stay at Sheffield Children's Hospital.
Now he is back home, back at school and back to his chatty self.
"From the moment he was allowed home, all he's talked about is being able to fundraise and help other poorly boys and girls," said Kai's mother Michele Boardman, 46, also mum to Katrina, 24, Tamzin, 12 and Laila, 10.
"Now he is looking forward to a marvellous Christmas. He's not completely healthy but much better than what he was.
"Compared to a year ago, he is brilliant. The amount of surgery he went through must have been so tough, but he never stopped smiling.
"He'd watch Mamma Mia every day in his hospital bed, singing along to all the songs. All the staff would laugh because he had his headphones plugged in and didn't realise how loudly he was singing."
Kai with mum Michele and famous visitor Jessica Ennis-Hill
Kai, of Hexthorpe, South Yorkshire, was diagnosed with a condition called chiari malformation when he was four, meaning lower parts of his brain had been pushed into his spinal chord.
Doctors initially said they would not operate unless the affects became life-threatening, but when his condition began to deteriorate in 2014 and he began to develop headaches, pins and needles and became sleepy, his concerned mum requested an MRI scan.
Results revealed a build up of pressure on his brain and doctors decided surgery was necessary after all.
"He got to the point where his brain couldn't drain fluid," said Michele, who is a full-time carer for her son.
"He also suffers problems with his balance, but he doesn't let it bother him. Every time he falls down he gets right back up again.
"His friends at school even brought in bandages for him in case he had any knocks."
To thank Sheffield Children's Hospital for their support, Kai decided to do a sponsored 24-hour silence. He raised £465 but has also raised thousands in the past.
"He really is my miracle," his mum said. "I can't believe how far he has come on in a year."
Cheryl Davidson, community fundraiser at The Children's Hospital Charity said: "Kai is an ongoing and amazing supporter of ours, and we are so grateful for everything he has done and continues to do.
"We need as many people as possible to join Kai, sign up for Make it Better Day and raise money to transform our amazing hospital."
