They suffered unimaginable pain after losing their two beautiful young sons - but parents Chris and Sarah Cookson put their heartache and grief aside to help other families.
Now the inspirational couple will be handed an MBE for their voluntary and charitable services.
Chris Cookson, of South Shields, will accept the New Year Honour alongside his wife Sarah who has been by his side throughout their heartbreaking journey.
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The couple brought their eldest son Charlie into the world on April 13, 2011.
Charlie was born with an undiagnosed condition and suffered from a number of serious illnesses which resulted in him spending most of his life in hospital.
At only two-and-a-half years old, the youngster lost his fight for life.
Chris and Sarah then set up The Charlie Cookson Foundation, now called the Charlie and Carter Foundation, to provide financial security to parents of seriously ill children in hospital.
They went on to welcome their miracle baby Carter into the world on Boxing Day 2018.
However Carter, who was born prematurely, suffered three cardiac arrests within hours of being born.
Doctors told the parents their baby boy had just weeks to live unless a new heart was found.
They campaigned publicly through social media, the press and TV, for organ donation awareness.
Devastatingly, Carter died before a heart could be found - at just 25 days old.
Chris, 43, who works as a customer delivery hub technician for John Lewis, said they were keeping their sons' memory alive by helping others.
He said he was "absolutely shocked" when he was told about the MBE but felt honoured that their charity was being recognised.
He added: "We want to help families who are going through what we went through. We have never had a life when our boys have been well. We don't know what it's like to have a normal family life.
"For two and a half years, Charlie was mostly in hospital. That was his home, he spent more time in hospital than out.
"And when we found out Carter needed a heart transplant, we had nothing in hospital. No change of clothes, nothing to freshen up - you go through the first 24 hours with nothing.
"You have your head in space and you don't know what's happening, you don't have a clue. You don't think about yourself, you just think about your child.
"We know that a care package is a massive help for parents. And there will be families who can't go back to work but still have to pay their rent. It's important to give them financial support so they still have a home to go to."
The couple have tirelessly been raising awareness of their charity and have taken part in various fundraising events, including the Boxing Day dip on South Shields beach, the Great North Run, and a trek from the Stadium of Light to St James’ Park.
To date, the foundation has financially and emotionally supported 83 families of children with life limiting illnesses.
The charity now has five trustees and Chris is the chairman. They are now looking to raise money for a respite caravan for families.
In December 2020, during the pandemic and days away from Carter’s first birthday and anniversary of his death, they returned to the paediatric intensive care unit at the Freeman Hospital in Newcastle to deliver care packs to the parents of children admitted there. They donated more care packages at the hospital again this year.
Sarah, 46, a dance teacher, said the charity "looks after the parents so they can look after their child".
Speaking of the MBE, she added: "It's good to know that Charlie and Carter's name is being recognised. Everything we do is for the boys. It's in their memory."
