At seven years old, Oliver Gent has endured more operations and painful procedures than most people experience in a lifetime.

The rarity of his conditon, which makes his bones and muscles grow in the wrong places, means there is only one other person in Britain who knows exactly what he is going through – his little brother Ben.

Remarkably the siblings of Compass Terrace, Gorleston, are thought to be the only people in Britain to suffer from Freeman Sheldon syndrome – an unwelcome claim to fame that has bought them to the attention of doctors and researchers in Seattle, USA.

It has plunged their parents Donna and Neil Gent into a life of continual hospital appointments. meetings and visits.

At times when they have undergone surgery on the same day in different hospitals, the couple have divided themselves between each boy’s bedside.

Now Oliver is loving his time at Woodlands Primary School, Bradwell.

And it is this spirit that has won him a WellChild Award from the national charity that helps sick children after being nominated by his social worker.

On Monday Oliver and his family will rub shoulders with celebrity supporters of the charity when they travel to London to pick up his award, in recognition of his positive attitude to life.

Mrs Gent, 29, whose own ME adds to the strain of looking after the two boys, said the family were looking forward to the awards.

“We take each day as it comes and live on adrenaline. We just want this to be for Oliver.”

Do you have a health story for the Evening News? Call reporter Sarah Hall on 01603 772426 or email sarah.hall2@archant.co.uk