Today, his devoted parents Zoe Boyle and Steven Gardener told of their pride at their courageous little boy, who lost his fight for life after just a week.

And they pledged to raise awareness of Edwards' syndrome, the incurable condition which affected 95 per cent of the cells in their baby's body.

The chromosome disorder can affect all the systems in the body, causing vital organs to shut down.

Steven, 23, said today: "People say it's unlucky, but we feel we were lucky. We're just glad he gave us a week. He will never be forgotten. He will always be with us."

Zoe, 18, added: "I'm so proud of him. I've never been so proud of such a little person in my life, especially for someone who had so much going on."

"He shouldn't have even made it here. It took over 95 per cent of cells in his body – only five per cent were healthy."

Zoe was 20 weeks pregnant when the couple were told during a scan at Sunderland Royal Hospital there was something wrong with their baby's heart.

At 29 weeks, during a further check-up at the Royal Victoria Infirmary in Newcastle, they were told their baby could have Edwards' syndrome.

About 95 per cent of babies born with Edwards' syndrome died before their first birthday.

The couple, from Castletown, refused a termination on several occasions.

Zoe said: "I felt like my heart was being ripped out of my chest. It's awful that something growing inside you is going to die."

They were also told that the baby had a cleft lip and palate on both sides.

Zoe decided against an amniocentesis test in the womb because it could put her unborn baby at risk.

Their son was born at Sunderland Royal Hospital by Caesarean section, on January 17 – two weeks before his due date – weighing 3lb12oz.

He was named after his dad and given the middle name Neil, after Zoe's dad.

Two days later doctors confirmed that he had Edwards' syndrome. He had few visible signs other than only having four toes on his left foot.

Zoe said: "I had told myself all the way through that he didn't have it."

Steven added: "You don't expect to be told there's something wrong with your baby and they can't do anything."

After 10 minutes of breathing unaided, the baby was attached to a ventilator in the hospital's neo-natal unit, because of problems linked to the cleft palate.

Zoe said: "I used to sit and say 'open your eyes for mam'. He knew what was going on around him.

"He would try really hard to open his eyes. When he got to the point when he was really swollen, I could see him trying so hard."

The couple held him as much as they could outside the incubator, but he could only be out for about three minutes before having breathing difficulties.

Zoe said: "The worst thing was knowing you're his mam but you can't do anything to help him."

But Steven's kidneys began to fail and his body became swollen.

Just a week after his birth, the couple had to make the heart-breaking decision to take him off the ventilation system.

He died in his dad's arms on January 24.

Steven said: "He had three little gasps. I could feel his heart but he was unconscious."

Zoe said: "You could see the relief in his face when they turned the machine off."

His funeral was held on February 1 at Sunderland Crematorium.

The couple are now saving up to have his ashes made into a ring for each of them.

Steven and Zoe are determined to raise awareness of Edwards' syndrome. Although they are not carriers, the fact that they've had a baby with a chromosome disorder means they have a one in 200 chance of it happening with a future child.