Born with an extremely rare genetic condition, brave Ewan Knox fought from his very first breath to his very last. 

The Carlisle tot should have been celebrating his second birthday next week. But sadly long-standing problems with his lungs eventually took their toll, and he died in hospital on Friday.

His heartbroken parents say their entire world has collapsed as they try to come to terms with the loss of their happy and loving son.

But Ewan's memory is already living on, with a fund set up in his name raising more than £3,000 in just two days.

Ewan was born at Carlisle's Cumberland Infirmary on May 6, 2014 and had to be resuscitated straight away.

Parents Mike Knox, 42, and Vicky Anderson, 37, of Denton Street, Denton Holme, said an earlier scan had identified possible health problems, prompting Vicky to be induced 10 days early.

But Ewan's heart rate started to drop rapidly during labour, and she was rushed in for an emergency caesarean section.

Unable to breathe, he was resuscitated and at 12 hours old was transferred to the Great North Children's Hospital at Newcastle's Royal Victoria Infirmary (RVI). In intensive care, he underwent a tracheostomy and he was put on a machine to help his breathing.

It was soon confirmed that Ewan had a rare genetic condition called Hallermann–Streiff syndrome. It is so rare, affecting only about 150 people worldwide, not much is known about it.

For Ewan, it affected the shape of his skull and chest, his bones and most worrying, his lung development.

Mum Vicky said: "He was always very small. He only weighed eight kilograms at nearly two years old. He was still in six to nine month baby clothes. He was tiny."

The couple were able to take Ewan home at about five weeks old and despite his tracheostomy, say he wasn't a poorly baby.

Vicky and Mike, who both work for Cumbria Army Cadet Force, said they took him with them when they went youth hosteling, hiking and on visits to see his older brother Ross, aged 19. 

"Most of the time he was really well. We took him on holidays all the UK," said Vicky. "He loved it. He was happy."

Mike added: "He was very cheeky and quite independent, and also very settled. 

"He hardly ever cried."

At 14 months Ewan was hospitalised with a chest infection for about two months, again mainly in Newcastle.

Although his tiny lungs were ultimately the problem, his condition was never deemed terminal and doctors were always positive.

He continued to enjoy life until just before Christmas, when he was back in hospital. Since then his periods of illness became more frequent but he always made fantastic progress.

About five weeks ago Ewan was well enough for them to go on holiday to Keswick, with the couple carrying him - and all his medical equipment -around Derwentwater on a final adventure.

But a week before he died it became apparent that his body was struggling with his limited lung capacity. 

Vicky and Mike were told that his condition was becoming life-limiting, though it still seemed they had plenty of time ahead.

However Ewan rapidly went downhill from there. His heart had enlarged as a result of his lung problems, he was in pain and starting to suffer. Doctors recommended that they stop ventilation. It was the hardest decision any parent could ever have to make.

He took his last breath in the arms of his parents, who were then able to take him home to Carlisle to say their final goodbyes.

"Ewan was our future. Everything has been ripped away. We will always question whether we did the right thing, switching the machine off that night, but we couldn't watch him suffer," said Vicky.

"I'm glad we didn't know earlier. It might have stopped us doing some of the things we did with him. It would have been really easy to stay in the house and not get out. But I don't think he'd have developed as much if we'd done that. He achieved so much. He was a star."

A fundraising page in memory of Ewan was launched on Sunday, and in 48 hours had raised £3,170. Mike, who served with the army, said friends all over the world have been contributing.

Vicky added that people who have followed his progress on Facebook have sent her messages. "People said he was a beacon of hope. That he put everything into perspective," she said.

The money raised will go to the Sick Children's Trust, which provides accommodation at Crawford House for families whose children are in the RVI - a charity they have benefited from.

*To support their campaign visit www.justgiving.com/Vicky-Anderson3 or text EWAN53 and the amount to 70070.