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‘We were told Drew would grow out of symptoms, then it was too late’

A couple who were told their three-year-old son would grow out of his symptoms were left devastated when he was finally diagnosed with one of the rarest cancers in the world.

Drew first became ill at the age of three when his parents, Melanie Barker and Jon Wright noticed a change in his behaviour. They went to doctors several times but it took months to get a diagnosis – by which time Drew had aggressive, unsurvivable, stage four cancer, reports WalesOnline.

Outlining the symptoms Drew presented Melanie said: “The symptoms displayed included a change in personality, constant fatigue, and being off his food. He became disinterested in anything that interested him before. He was like a different child and I instinctively knew as a mother that there was something wrong with him.

“The main [symptom] was his night sweats. He would wake up with severe night sweats and we were just told it was something he would grow out of and not to worry about it. At one point we had 90 nights in a row where none of us slept through the night. He would wake up crying or sweating and we would have to change his bedding in the night.

“Other symptoms could include pain that doesn’t go away, persistent vomiting, or headaches that don’t seem to go away. Cancer is right at the bottom of the list of what a health practitioner might think is causing the symptoms. But as a parent you need to keep pushing the issue, which is unfortunately what happened to us for so long. We were told: ‘he’s just a child’, ‘it’s growing issues’, ‘don’t be paranoid Mum, you’re passing your anxiety onto him’, but actually he had one of the rarest cancers in the world. The instinct of parents is what is so often overlooked but it’s probably one of the biggest signs that something isn’t right with your child.”

Drew was initially diagnosed with rhabdoid cancer but this was later reclassified as chordoma cancer. Although this cancer is often slow-growing in adults it is extremely rare and aggressive in young children.

Drew with parents Jon and Melanie

Drew with parents Jon and Melanie (Image: Sourced from Melanie Barker)

Drew died in 2017 and over the last six years his parents have raised awareness and started the Drew Barker-Wright Charity. Melanie said: “It’s a grief you can’t compare to anything else, losing a child. It’s absolutely life-changing and it’s completely out of the natural order.

“You don’t expect to have to arrange a funeral for your child. It’s been hard but I think that’s why we wanted to put all the money that was raised locally [during his illness] into good use.”

Through the charity the family campaigns for better awareness of the symptoms of childhood cancer among health professionals and families alike. Melanie said: “Early diagnosis saves lives and we are the perfect example of that. By the time we were taken seriously Drew was already at stage four and it had spread to different parts of his body.

“It meant his prognosis was very, very poor from the outset. If you can catch the signs early you stand a much better chance. So if we can make families aware of that it could give a child a much better prognosis and we would feel like we achieved something in his memory.”

Although they don’t know exactly what would have happened if Drew’s cancer was spotted and treated at the earliest opportunity Melanie said it would have at least increased his chances of survival. She said the last seven years have been incredibly difficult without their “beautiful and delightful” son.

Drew's prognosis was poor by the time he was diagnosed

Drew’s prognosis was poor by the time he was diagnosed (Image: Sourced from Melanie Barker)

Paying tribute to him she said: “He was really articulate for his age even though he didn’t start speaking until quite late. We were worried he was going to keep quiet but then one day he came out with a full sentence which knocked us off our feet.

“I think a lot of the nurses fell in love with him because even though he was only three he could communicate really well. He was a delightful child and very creative. Before he became ill he was a bundle of energy – he ran everywhere and was always singing. He would wake up in the morning singing and would come and wake us up by knocking on our door and singing to us. He loved to dance and he was starting to read and he loved to read with me. He was quite forward for his age and we look back on it with hindsight and think it’s because he was never meant to be with us for very long. He was like an old soul in a young body.”

Describing the reality of life after losing a young child Melanie said it has been an incredibly difficult emotional journey that would continue for the rest of the family’s lives. She said it was also often challenging for others around them to comprehend.

She said: “It has been hard and it is still hard – it will have been seven years [since his death] in February 2024. Drew was our only child and we have not been able to have any more children so it’s been an incredibly hard journey and it continues to be hard. It’s constantly evolving and changing. It’s a very isolating journey because even though lots of children are dying all over the world every day it’s not something that has happened to your neighbours or someone you know so you do feel very isolated with it.

“We always want to talk about Drew but we never want to make people feel uncomfortable. Unfortunately when you meet new people usually one of the first questions that come up is: ‘Do you have children?’ and it’s really difficult because we never want to deny that we had Drew so we say: ‘Yes we had a little boy and he died’ and it’s a conversation-stopper – it can make a room go quiet.”

Because of how alone the family felt throughout Drew’s illness, despite the amazing support from nurses, Melanie said it was one of their main motivators to help other families affected by rare childhood cancer. Through the Drew Barker-Wright Charity not only do they help fund research into rare childhood cancers but they provide information to families and connect them with one another so they always have support.

Melanie said: “We felt passionately about starting the charity because although when we were in hospital in Birmingham we were very well-supported while we were there we were also the only people on the oncology ward with a chordoma. Nobody had ever heard of it and most of the nurses and doctors on the ward had never encountered it, which made it even more isolating.

“There were no charities for us to reach out to and we decided when we were in hospital even before Drew passed that we wanted to change that so that if anybody else found themselves landed in a ward and got diagnosed with this particular cancer they could start tapping into Google and hopefully find a charity that was based around that cancer, which we really struggled to do.

“Having a child diagnosed with cancer is the worst news any parent can be told but there were groups for neuroblastoma parents or leukaemia parents and they were all talking to each other about their treatment plans and we didn’t have one because nobody knew how to treat his cancer so we felt isolated.”

In the nearly six years since the Drew Barker-Wright Charity was founded the organisation has funded £135,000 of research into rare childhood cancer. The charity has also put in place a grant application to provide some financial assistance to families of newly-diagnosed children in the UK.

It currently supports a paediatric chordoma initiative in America, which is researching to develop kinder targeted treatments for children with chordoma. The charity also has a private Facebook group to help connect families of children diagnosed with chordoma around the world so they can support each other.

Melanie said: “If we’re going to do anything it would be to raise awareness that although what Drew had was very rare childhood cancer isn’t as rare as people think. It’s one of those things where unless it comes along and affects your family most people know very little about it. It’s one of those things that’s just so horrible that people don’t want to think about it but the more we can make people aware then the more children we can catch early which would give them a much better chance.”

One of the earliest pursuits the family decided they wanted to do through the charity was an initiative called ‘Drew’s Gift’ – something the family wanted to create as a lasting legacy in Drew’s memory to help others. Melanie said from the beginning they “instinctively knew it had to be a book”.

She said: “You’re given a lot of books to read in hospital and a lot of them are about being in a hospital and having an illness to help the child understand what is happening to them. We decided we didn’t want to go down that route and instead wanted to do an adventure and something magical and. We wanted it to be something that would be an escape when you read it and for it to be something you read over a few nights.

“We wanted to include his soft toys Bunny and Moo which went everywhere with him and became known all over the hospital. We knew we wanted it to encapsulate rare and wonderful things because even though the cancer was terrible he was a rare and unique child and there’s something wonderful in that.”

Melanie said the family is lucky enough to know talented local author Owen Sheers who straightaway said he would take on the family’s idea and bring it into fruition. After several years of working hard behind the scenes the book, called Drew, Moo, and Bunny Too, was finally published in September, which also happens to be childhood cancer awareness month.

The book will be sold internationally

The book will be sold internationally (Image: Sourced from Melanie Barker)

“It’s an adventure story about the three of them,” Melanie said.” They fly off at night on a magic rug and encounter problems on the ocean. They meet up with a magic pirate ship and meet Captain Jacqueline. Together they search the universe for rare things. When they find them they capture them and keep them on the ship. It’s about how Drew, Bunny, and Moo are rare but the love they share is rarer. It’s the power of their love that allows them to go on this journey together.

“It’s illustrated by Helen Stephens and is mindblowing. She took our ideas and Owen’s words and just brought them to life. We sent her pictures of Drew and she’s captured him beautifully with his angelic little face and the way his hair always used to stick up at the back of his head no matter what I did.”

Melanie said the book will be sold internationally and is available from well-known retailers including Amazon and Waterstones. She said she knows Drew would be very happy indeed at the thought of being featured in his own book.

She said: “Thinking that he’s featured in a book with a magic pirate ship wherever he is I just know he’s got a massive smile on his face. He would be proud that we have taken all the pain and heartache and tried to do something positive with it – although it’s been hard because at times we’ve just wanted to bury ourselves in the sand and never come out again. Drew always liked to help other children. If there was ever an upset child he was the first to go over and try to find out what was wrong, so I think he would be very proud that we are trying to spread love and kindness as best we can.”

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