'Our sons died to save other children's lives'

Charlie Cookson's parents set up a charity in his memory to help the families of seriously ill children

Since the deaths of their two infant sons five years apart, Christopher and Sarah Cookson have sought to help the parents of other ill children. To mark organ donation week, they are encouraging families to talk about the seemingly impossible.

Christopher and Sarah got just eight hours to enjoy being new parents again.

Their son Carter was born at lunchtime on Boxing Day 2018, the best Christmas present possible, but that night they were told their baby boy needed an immediate heart transplant.

The South Shields couple had spent the previous five years building up the courage to try for a family again in the wake of their death of their first son Charlie, and now they faced the torment of losing a child all over again.

"We just had no words," Sarah, 50, said.

Chris and Sarah lost their son Charlie in 2013

Charlie's two and half years had been a mixture of fun and hospitals, love and serious illness.

"He was so funny," Sarah said. "A proper character. He had an infectious laugh, it was a proper belly laugh.

"He loved to dance and bounce."

• Listen to BBC Radio Newcastle's Make a Difference Charlie and Carter Foundation interview

Charlie had a blood disorder and problems with his muscles and bones, leading to viruses and seizures and culminating in his death on 29 October 2013.

"It was the worst time of our lives," Christopher, 46, said.

Having experienced the torture of life as parents of a seriously sick child, Christopher and Sarah knew what issues other families faced.

"Sarah and I said to each other 'what would have been the biggest support we could have had when he we had Charlie', and the answer was money."

Charlie Cookson's family said he brought great joy

The demands of the world do not stop just because a child is sick - bills still need to be paid.

Determined their son's short life and death would not be in vain, they set up a charity to offer financial support to the families of other children facing life-limiting illnesses.

"When a child needs 24/7 care, one or both parents would have to give up their job or reduce their working hours," Sarah said, recalling how she and Christopher operated in shifts to be with their son.

"It has an impact on the family's finances.

"We help relieve that so they can have better quality of life with their sick child, because time is going to be very precious for them."

Since 2013 they have raised more than £1m and helped some 135 families across the country.

For its first five years, that's all the Charlie Cookson Foundation sought to do.

Then came Carter.

Eight hours after he was born, Carter Cookson was diagnosed with a major heart problem

When they knew Sarah was pregnant, there was a mix of emotions, fear and joy jostling for position.

"I had been so paranoid it would happen again," Sarah remembered.

"When Charlie was ill we did lots of tests and we could not find a reason for his illness."

But when Carter arrived they were ecstatic.

"We had eight hours of normal, not thinking anything was wrong," Christopher said.

Then began the race against time to find his new heart.

In the end they only had 25 days before Carter succumbed.

"Charlie had a lot wrong with him but his heart was perfect," Sarah said

"Then Carter was fine all apart from his heart. It was just uncanny."

Carter Cookson died 25 days after he was born

While Charlie's life had highlighted the financial pressures families faced, Carter's introduced them to the anxieties of organ donation.

"It's an awful situation," Sarah explained.

"You know that when you are hoping to get a heart for your child, it means another child must be seriously ill.

"To ask their parents to then donate is horrendous, that's why people need to have the conversation and really think about it before they are in that situation."

Now the charity had two names and two aims.

In Charlie's honour, the Charlie and Carter Foundation offers financial support to families. In Carter's they promote organ donation.

Sarah Cookson says the charity is her sons' legacy

"We try and encourage people to really think about if the worst was to happen and your child wasn't going to survive, really think about allowing your child's organs to be donated to save other children's lives," Christopher said.

"We couldn't find the heart transplant for Carter, we will never get over that, but what if we can help other families that don't have to lose their child?

"We weren't dealt a pack of cards where we had healthy children, maybe our boys were here to save other children's lives."

Sarah agrees.

"They came, they had a huge impact and then they left.

"Our boys showed so much fight in their short time, we owe it to them to keep fighting to help others."