A mum and dad who used the tragedy of losing their first son to set up a charity which supports other families are facing new heartache as their second baby fights for his life.
Sarah and Chris Cookson - who set up The Charlie Cookson Foundation - welcomed their little boy Carter into the world on Boxing Day but were devastated to discover their 'little super hero' has serious problems with his heart.
Little Carter, is fighting a serious heart condition in Freeman Hospital in Newcastle.
In a message posted on Sarah's Facebook page, she said her son was now undergoing heart surgery and having a pace maker fitted.
She said: "We need your support and prayers more than ever.
"Our baby boy is now in surgery, they are draining the left side of his heart and fitting a pace maker.
"He is also now on a heart transplant list as a Plan B if the first stage of surgery does not work.
"He will be in surgery most of the day, we are sitting still trying to digest what is going on.
"He has so much will to be here I can see it in his eyes and his feistiness.
"Please keep your prayers going. If this first plan does not work we will need a global push to get him a new heart.
"We only have a limited time to fix our boy's broken heart "
It's the second heartbreaking ordeal the South Shields couple have faced after losing Charlie, at the age of just two, in October 2013.
Charlie died five years ago after battling a mystery medical condition which meant he spent most of his short life in hospital.
He had numerous medical issues, including epilepsy, as part of his mystery condition which left him needing round the clock care.
During his life he also overcame a number of serious illnesses – including meningitis and septicaemia – and underwent several operations, including two hernia repairs and a brain biopsy.
His devastated parents set up The Charlie Cookson Foundation in honour of the youngster - a charity which gives grants to help families who have a child with a life-limiting conditions.
And now their newborn son Carter is facing a battle of his own, suffering three cardiac arrests when he was just a day old.
However, none of his ailments were genetic and the couple know there’s no reason for this baby to have any similar health issues.
His parents made the decision to let his body rest an attach him to an Ecmo machine - which oxygenates his blood and pumping it back into his tiny body.
Sarah said: "Our beautiful baby Carter has something wrong with his heart, he is now attached to a machine that is keeping him alive, until his little body can show us that he has enough strength to try and work again, we are so heartbroken the pain is suffocating.
"I don't know why God is being so cruel and putting us through so much heartache, we truly do not deserve it.
"We are praying that his big brother is working his magic and we see a miracle in our Carter."
Shortly after he was born the family said in a statement posted to the Charlie Cookson Foundation Facebook Page said: "Welcome to the world Carter.
"Charlie's brother arrived boxing day he is just gorgeous but he is also very poorly. Carter has a very poorly heart and we are all hoping for a miracle.
"Since we almost lost him on the 27th avoiding 3 cardiac arrests with intervention, his mammy and daddy had to make the decision to let his body rest and attach him fully to an Ecmo machine which has been keeping him alive, oxygenating his blood and pumping the blood back in to his body to keep his organs alive.
"The doctors have decided to start and tweak down his support to see how he reacts... we are praying so hard that his heart starts to regulate a beat and he proves he can do this without the machines.
"Please keep your prayers going they are helping him get this far! With all your love he CAN do this! He is A COOKIE!"
In a message posted on Sarah's Facebook page, she said: "We have loved seeing his eyes open and his little arms moving...but at the same time it is bitter sweet.
"If we shut out the machinery around him we can pretend, but realistically if his Ecmo machine was not attached, at this point his heart would not work and he would not be with us.
"We are living in a bubble of fear, his heart is very complicated in it's rhythm, it is so hard for us to get our head round but the knowledge on this PICU is incredible, we know they are doing their very very best for our baby boy.
"His little body has had to be shocked three times in the past 24 hours to bring his heart rate down from 300 bpm ...a phone call to our room at 3am is like being shot in the heart with a gun.
"We are just living off our nerves with no sleep, praying so very hard."