Belfast Telegraph

How little Charlie left legacy that fills family with pride

Brave boy raised £100k for charity and pioneered remote learning for ill kids

Charlie with his mother Cliodhna and sister Nancy
Charlie with his mother Cliodhna and sister Nancy
Charlie and his family at Britain’s Got Talent
Charlie's sister Nancy with a cake made to look like Gus, Charlie’s favourite soft toy
Charlie & Nancy's Little Book of Laughter
Claire Williamson

By Claire Williamson

In just nine short years, Charlie Craig created a legacy that will last forever.

The little boy from Lisburn spent the majority of his life receiving specialist care for leukaemia, including two bone marrow transplants. He was diagnosed with leukaemia when he was just two years old.

Over the course of his treatment the St Joseph's Primary School pupil spent time in hospital in Belfast and Bristol. But he was admitted to hospital in mid-July in a critical condition having suffered graft-versus-host disease (GvHD) since his second transplant, a chronic complication associated with transplants.

The brave youngster passed away earlier this year following his courageous fight. He died at the Royal Belfast Hospital for Sick Children on August 2.

His mum Cliodhna said he was perceptive beyond his years and recalled that he was always more concerned about everyone else.

"He was a very determined wee boy. His school have set up an award called the Spirit of Charlie Award, and in their eyes it's for kids who display his values of fairness, justice and peacekeeping.

"Charlie always had an eye for the underdog. Because he had suffered himself and knew what it was like to suffer, he was very sensitive to other people of lesser ability or anybody he perceived was getting a hard time.

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"When he was in the cancer unit in Bristol and Belfast and he could hear other kids crying, he would be worrying about them and saying 'give me a piece of Lego or toy' and saying 'mummy bring that into them, it might cheer them up'. He was always thinking how he could help."

The remarkable little boy had real kindness and was so generous. For instance, when Notre Dame was devastated by fire earlier this year he saw it on the news and wanted to raise money to help them rebuild it.

And when Charlie received money for his First Holy Communion, he insisted on giving any money he received to a charity in Africa, telling his mum: "I'm giving my money to Africa and I don't want to hear another word about it."

She said: "He looked at things in a very mature way. He was able to see things that might take some people a lifetime, to have that level of charitability or forgiveness or spirit of kindness."

And while Charlie loved giving and was very concerned about others, his favourite people were his family - especially his little sister Nancy (8).

"He was my biggest fan, he loved his sister and his daddy Fintan. He was always looking out for me. Even with his wee sister, it would take me only two fingers to count the number of times they fought in their lifetime." Nancy and Charlie were extremely close and loved to play together. She has since written several moving poems about her brother who she adored so much.

Cliodhna explained: "The policy in the hospital rooms was that Nancy wouldn't be allowed in because she was under the age, she was a young kid and the risk of infection.

"At one period Charlie was in Bristol hospital for about eight-and-a-half months and he was so unwell. And I said: 'If you want this child to get better you need to get his sister into this room, because the medicine won't do that bit of it'."

They would play school with her teddies and shared an impressive collection of Lego, but for Cliodhna two moments stand out between her children.

"When Charlie was lying in the hospital about five days before he died, the first thing he said to me was: 'Mummy it's been about two years since Nancy was able to play with me'. And he phrased that as in it was bad for Nancy, she wasn't able to play with him, not the other way round.

"And the day before he died, when Nancy left the room for the last time and he died that night, he just turned round to her in the bed and said: 'Nancy, I love you so, so, so, so much'. And that was his last words to his sister.

"We didn't expect him to die 12 hours later, none of us thought that. He adored her and she adored him."

Charlie in his life experienced a lot of firsts, and was a pioneer in terms of the incredible initiatives he was involved in, and has blazed a trail for many other young cancer sufferers.

He was the first child to bring a special robot initiative into the classroom - which is controlled by the child from home, and sits in the classroom and uses a live video link to offer the next best thing to being there in person. It was introduced by the Children's Cancer Unit Charity.

He also raised more than £100,000 for charities and the family are hoping to add to this with another fundraiser event today in St Patrick's Parish Centre, Lisburn, from 10am to 6pm to raise money for charity in a bid to continue his passion for fundraising.

The family held the second biggest donor drive in the UK outside London in 2014, and Charlie also created a wonderful joke book with his sister.

They also campaigned for an ECP machine, a recognised treatment for graft-versus-host disease, which children are now able to use. Charlie also broke medical boundaries and top consultants in Bristol hailed him as "rewriting the textbook medically".

Reflecting on Charlie's incredible legacy, Cliodhna said if they were to put all his achievements in a room it would be full of cheques, Lego builds, acts of kindness and more.

But she said the cruellest part of Charlie's journey was the graft-versus-host disease, which she described as "brutal".

Cliodhna added: "People think Charlie died of leukaemia; he didn't, Charlie died of graft-versus-host disease, which is a terrible disease to get, because all he did to get that was overcome cancer three times.

"This was the aftermath of the treatment and it's a disease when you get out the other side of transplant that they don't know enough about.

"It's terribly unfair, they've been doing transplants for 60 years and a large proportion of people do get graft-versus-host disease and do die from it.

"Charlie as a child got through cancer treatments remarkably well, we killed the cancer but the aftermath - it was brutal.

"He lost his mobility, he lost his independence, every organ in his body was practically affected, including his skin, which is the largest organ in the body. It was an unbelievable, unpredictable illness to watch and you think: 'Why is this even allowed to happen in this day and age?'"

Cliodhna is now on a mission to raise awareness of the disease and has joined an organisation - Rehabilitation Association for Hematopoietic Cell Transplant - that works worldwide to improve the quality of life of patients who live with it.

As the family look to the future, events like Christmas and birthdays are as hard as any other day, but they remain strong for Nancy.

"Why would Christmas Day be any different than any other day because he's not here?" she added. "Christmas was a difficult time for Charlie, a sick kid doesn't get better just because it's Christmas Day."

However, this year a special cake will take centre stage and will be in the form of Gus, a very special cuddly toy which meant a lot to Charlie and is incredibly important to Nancy.

Gus was Charlie's little Arctic penguin teddy who went with him everywhere, and poignantly accompanied him in his coffin.

Now, there is Gus the Second, as Nancy now has one too - and a picture of him has been etched into Charlie's headstone.

Charlie and his mum would often bake cakes, and one day he asked his mum to create one of Gus, but it didn't quite work out, so instead they began ordering cakes of Gus for special occasions.

She said: "So for Christmas I have ordered in advance my Gus cake, for Nancy's point of view, Gus has to be central to whatever the event is."

And when things get tough, they think of Nancy and try to live through her view of the situation. She said: "It's awful to lose a child. But I don't want Nancy to grow up thinking the whole thing fell apart. I want her to know that we were dealt a difficult card but we got on as a family and we made the most of it."

But they are encouraged by the resolute spirit of their daughter, who is already planning what they can do for Charlie's birthday in May. She hopes to release balloons in the sky at the graveyard.

"We are just trying to remember in the midst of quite a lot of suffering what Charlie stood for - I heard Tyrone GAA manager Mickey Harte at a talk about his daughter Michaela (who died on honeymoon in Mauritius), say: 'You are better to have loved and lost, than never to have had them in our lives'.

"And I never dreamt that we wouldn't have him here. I always imagined he'd be bringing girlfriends home, he was going to call his kids Johnson and Melania - Johnson after Dr Johnson in the Royal Victoria Hospital, who he loved, and Melania because he thought Donald Trump's wife's name is pretty cool. He was going to have two kids and build a house in the back field and I was going to be the child-minder and he was going to have a company called Gus enterprises after his teddy.

"He had it all planned and I never thought any of that wouldn't happen." Cliodhna added: "As my dad said at his funeral: 'You haven't heard the last of Charlie Craig'. And as long as I have breath in my body I will try and do work for him."

  • To donate to the Children's Cancer Unit Charity visit www.justgiving.com/NICCUC or GvHD awareness at www.justgiving.com/crowdfunding/cgvhd

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