‘It’s what the boys would have wanted’ says MBE mum Sarah Cookson who set up the Charlie and Carter Foundation in their honour

Sarah, 47, and husband Chris, 44, were heartbroken when they lost their son Charlie in 2013 at just two-years-old. Charlie had been born with a “number of life-limiting conditions”.

Tragedy sadly struck the couple again in 2018 when Sarah and Chris lost their second child, Carter, who died at just three weeks old after being born with a heart condition.

Despite the devastation, Sarah and Chris channelled their energy into establishing The Charlie and Carter Foundation to help other families “experiencing the difficulties we did” and to leave a “lasting legacy” in honour of the two boys.

Since being formed in 2013, the charity has now provided help to 103 families with over £300,000 of financial support.

After being informed of her award, Sarah, from South Shields, said: “I didn’t think it was real at first and it’s still a bit surreal. I’m still not sure what I’m supposed to do with those letters. Am I supposed to put them after my name on my Facebook page?

"Establishing the charity and helping people who are in the same situation we were is what keeps me going and I just want to make Charlie and Carter proud.

"When you have child will a life-limiting illness you just want to give them the best life possible and make memories. This can be really difficult when you still have to go to work to pay the mortgage and bills.

"We provide financial relief to cover this to allow parents to concentrate on their children. It just relieves a bit of pressure and stress and allows them to focus on their family and sick child.”

Another key focus of the charity is to raise the profile of organ donations after Carter passed away due to being unable to find a heart donor.

Sarah added: “I thought once you had a transplant, as long as the body accepted it, you would be okay, but on average a donated heart only lasts 10 years.”

Sarah’s MBE follows on a year after her husband Chris was nominated for the same award in the then Queen’s New Year Honours List.

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She said: “Because of the Covid backlog, we only went to Winsdor Castle on December 14, where Chris received his MBE off Princess Anne. It’s definitely a pinch yourself moment to know we both now have one – there can’t be many husbands and wives who have an MBE.

"It’s always a bitter sweet moment as we have that cloud hanging over us and wish we could have achieved this without going going through what we have.

"For us both to have the award is what the boys would have wanted. We are a team and I feel honoured, but it’s also recognition for everyone who has helped the Foundation.

"It makes you walk that little bit taller.”

To raise money, Sarah has led and participated in many events including an annual Boxing Day dip, running the Great North Run and leading a trek from the Stadium of Light to St James’ Park.