By Kris Jepson
Exclusive: Carter Cookson's parents have told ITV News Tyne Tees they hope more people will join the organ donation register in his memory.
Speaking for the first time since their three-week-old son died on Saturday, the couple said they want Carter's legacy to be one that saves lives in the future.
Carter's mum, Sarah Cookson from South Shields told ITV News "when people are in this position or when they're just sitting and it pops up on their feed and it's like 'organ donation, have a think about it', I just hope that they picture his little face and think, that little boy could still be here if there was more people on that donation register".
Watch @krisjepson's report here:
Carter Cookson passed away at the Freeman Hospital in Newcastle on Saturday, following a three week campaign appealing for a new heart.
He was born on Boxing Day, but suffered three cardiac arrests just hours after his birth. He was fitted with a pace maker, but did not respond to emergency surgery.
He needed a heart transplant and his parents appealed to the nation to raise awareness of his plight, but to no avail.
On Saturday, the machine Carter was relying on to pump blood around his body needed changing again, but his body was weak and he passed away.
The couple had less than a month with their newborn child and between speaking to the press to raise awareness he needed a new heart, and their son receiving treatment from staff at the hospital, they tried desperately to make memories with Carter.
When Carter passed away at 5.44pm on Saturday, the couple were in no doubt about what they had to do.
They say they knew he had helped people and his legacy had already started, but they wanted to reiterate their stance on the importance of organ donation.
Unfortunately there were no babies the same size as Carter at that point in time who needed his organs and that is something that has saddened his mother.
Carter's story has grabbed the attention of millions of people across the country and the rest of the world.
Even the Prime Minister spoke in Parliament about his fight for a new heart and organ donation.
It was the support from their home town of South Shields that really touched the couple.
Sarah said "The messages of support and their generosity and their kindness has just been so overwhelming, you know, we’ve got a lovely town in South Shields that always get behind times of sadness, but to get messages from New Zealand and Australia and everywhere..."
Carter's unexpected and devastating heart problems came as the cruelest of blows for the Cooksons, who lost their first son Charlie in 2013 when he was just two-and-a-half.
After Charlie’s death, the couple set up the Charlie Cookson Foundation in a bid to support other families with seriously ill children.