East Lothian Courier

Mum shares heartbreak­ing story

- Youtube.com/@children withcancer­uk/videos

After surgery to remove the tumour that was now spreading out of his ear canal, the doctors confirmed a diagnosis of cerebellop­ontine paramening­eal rhabdomyos­arcoma, a rare soft-tissue cancer.

At this time, Devon and family were hopeful that Dax’s chemothera­py treatment was working as he seemed to be making improvemen­ts and was learning to walk and talk.

But during a scan to check his progress in July 2020, doctors noticed that the cancer had spread to his spine and there was nothing else that they could do.

Devon, who works as a newborn photograph­er, spoke about the moment the news was broken.

She said: “We thought Dax was doing really good.

“When we went for the scan results, they said that it was everywhere.

“There was nothing they could do; you just don’t prepare to hear that.”

Dax’s body could not recover and his parents made the heartbreak­ing decision to take him home, where he sadly passed away.

Devon, who described her son as having “the biggest and brownest eyes”, said that Dax’s final days had been spent in bed.

She said the family were able to cuddle up with him and that “you just lose yourself when you lose your child”.

Devon, 33, said: “With Dax now having full facial palsy and being deaf in both ears among other physical problems, we could see that even with a miracle his little body had been wrecked from the cancer.

“It just wasn’t fair to him to continue.

“On August 31, 2020, Dax passed away at home in my arms.

“He’d been surrounded by all of his family that day and we’d told him it was OK to go.

“He was two years, seven months and one day old.

“He’ll always be loved and remembered.”

When deciding to share her story in Children with Cancer UK’S new ‘Real Stories’ campaign, Devon hoped to raise awareness for other parents experienci­ng bereavemen­t.

She wanted “for everyone to listen and to pay attention to these stories, not to change the channel or flick the page quickly”.

Devon added: “It’s not pleasant to look at, it’s not pleasant to read, but we, and all the other families, need you to listen to these kids’ stories because they deserve it and they need your help.”

Jo Elvin, CEO at Children with Cancer UK, thanked Devon for sharing her story.

She said: “Devon has been so generous and courageous in sharing Dax’s story and her commitment to raising awareness for other families is truly inspiring.

“Our vision is a world where every child survives cancer and we continue to fund essential research into this devastatin­g disease to stop more families going through what Devon has.

“It’s been an honour for Children with Cancer UK to work with Devon on our new Real Stories campaign and we hope viewers will resonate with her bravery and a mother’s love for her son.”

To watch Devon’s Real Stories interview, go to

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