More on KentOnline
More on KentOnline
Little Ben Hargreaves has gone through more than your average five-year-old.
Even before he was born, the youngster, from Cliffsend, wasn't expected to make it, with parents Emma and Andy told it was unlikely they would bring a baby home from hospital.
When he eventually made his way into the world, suffering congenital heart disease, he was whisked off into surgery with his devastated mum and dad left with nothing in their arms but a form to be signed saying they understood he may not survive.
But now, five years on, the plucky little boy is thriving and he wants everyone to know it.
Even as mum Emma tells the story of his difficult journey, Ben interrupts, insisting she includes the fact he can do handstands.
"He's a very bright, chatty, happy and boisterous boy," she said. "He takes it all in his stride.
"In the past he has asked why he is different, why he can't play football with his friends, and when he started school he asked me not to tell anyone about his heart condition."
But Ben is now sharing his story by featuring in a music video for charity ECHO, which supports children with heart conditions and their families, to help others suffering the same.
"He was so proud when we told him that by doing this he might be able to help the charity he loves," added Emma.
"He knows ECHO does a lot for us and helps us connect with other heart families so we don't feel so alone."
The mum-of-two admits the past five years have been difficult, starting from the moment she found out he had a heart condition when she was pregnant.
"We were told not to expect to bring a baby home, but we were then sent to the Evelina Hospital where doctors said, 'no, we can do this'."
He was born at St Thomas' in London and transferred to the neo-natal intensive care unit before being taken to the Evelina for surgery to have a pacemaker fitted. He was less than 48 hours old.
Emma didn't have a chance to hold him and was told there was a one in 20 chance he wouldn't survive.
"They are amazing at the Evelina. He got through his operation and I'll never forget the surgeon standing there and I said "I owe you my life" and he said "it's just my job".
"Within two days he was out of intensive care and within 10 days he came home."
Everything was going well for the family until Ben reached three and the wires on his pacemaker broke, due to scar tissue and the simple fact that he was an active child.
He was blue-lighted to London, but due to a severe fever, had to shield for two weeks before he could have surgery for another pacemaker to be fitted.
It is hoped he won't need another fitted until he is nine, but he will have to have surgery throughout his life.
Emma admits Ben, who has a seven-year-old sister Zoe, does sometimes ask why no one else at school is like him.
"He can't play contact sport, which is a problem because he loves football, so it means he can't play that with his friends," she said.
"At school he can't sit crossed legged on the floor so he has to sit on a chair."
But she says he is more concerned about his friends with heart problems, like best pal Emily, who was in an incubator next to him when they were newborns.
"She was born the day before him and had her operation the day after and he spends more time worrying about her than himself," she said.
"She's also in the music video appearing next to Ben."
The #1in100 I Am Home music video features 77 children with heart conditions and aims to help raise awareness of congenital heart conditions, which affect approximately 1 in every 100 children born in the Evelina.
It will also help raise funds for children's heart charity ECHO and the Children’s Heart Fund at the Evelina.
To see the video click here.
