Ewan, 17 months, was one of just eight babies born each year with Pfeiffer syndrome, a genetic disorder which causes skull bones to fuse prematurely.

He died just days ago at Newcastle General Hospital after a build-up of fluid on the brain led to him needing life support.

Family and friends gathered round him for his final moments, including his big brother Owen, four, who says that Ewan is "flying with the stars and angels".

Mum Nicola Wright, 26, who lives at Toronto Square, Thorney Close, said: "Everybody loved Ewan. he was such a character. Him and Owen were very close. they really loved each other. Owen would help look after Ewan."

Ewan's rare condition meant that he was often in and out of hospital, including a six-month stay at the specialist Alder Hey Hospital in Liverpool, but it never dimmed his bright character.

Dad Thomas, 28, said: "Once Ewan caught your eye, he had you. He had just started shuffling on his bottom. he would start at one side of the room and once you turned around he was at the other side."

Ewan had been through a lot in his short life, including an eight-hour operation in September 2006 to bring forward the front part of his skull to relieve pressure on his brain.

But the little battler, who was born on May 11, 2006, had impressed doctors with his development and had just started to catch up with his peers.

Nicola, who received Ewan's diagnosis when she was 32 weeks pregnant, said: "He really came on after that operation and started to develop his own character. He couldn't speak but would click his tongue and shake his head to let you know what he wanted."

The tot also had to be fitted with a tracheostomy to open up his airways, a gastrostomy tube to help him feed and a shunt to relieve fluid from the brain.

This Tuesday the family were due to be given a date for the youngster's next operation, which would have brought forward a section of his face.

Nicola said: "At the end there was nothing else that could have been done for him and we had to decide to switch off his life support. It was some comfort that everybody was there to say goodbye to him.

"I just want to say a huge thank you to all the staff at Alder Hey for all the love and help they gave him."

Ewan's funeral was taking place today, at 11.30am, at St Mary and St Peter's Church in Springwell Road, followed by interment at Bishopwearmouth Cemetery at noon.