Story

One Day Soon: 

A story about MND, family and making every moment count

When author Cristy Burne began writing what would become One Day Soon, she wasn't planning to write a book. 

Instead, she was trying to make sense of the unimaginable. 

Her husband's brother Rohan had been diagnosed with a genetic form of motor neurone disease (MND). Suddenly, what began as concern for a loved one became something that touched the entire family. The diagnosis meant Cristy's husband had a 50 per cent chance of carrying the gene, and if he did, their children could inherit that risk too. 

"I was journaling through the experience," Cristy says. "It was really just a way of coping and trying to make sense of what is a devastating illness, but also capturing some of the beauty of it, realising that moments are so precious together and that time is so fleeting." 

The result is One Day Soon, a powerful verse novel for readers aged nine and above that explores MND through the eyes of a young boy named Alex. When Alex's uncle is diagnosed with MND, Alex is forced to confront difficult questions about illness, mortality, genetics, and what the future might hold for his family. 

While the subject matter is confronting, One Day Soon is ultimately a story about love, connection and finding joy in ordinary moments. 

Much of the story draws directly from Cristy's own family's experience. One scene, where a family dinner unexpectedly turns into a dance party, was inspired by a real moment that helped transform the way they thought about time together. 

"How glorious it is to be able to dance," Cristy says. "That's something we take for granted. He didn't take that for granted anymore, and neither did we."Image Caption: Rohan inspired One Day Soon, author Cristy Burne’s verse novel about family, genetics and living with uncertainty. Cristy says Rohan’s humour, presence and determination to embrace life helped shape a story that celebrates joy, connection and the importance of making every moment count.

Alongside its emotional depth, the book gently introduces young readers to concepts such as genetics and inheritance. With a background in science communication and genetics, Cristy wanted to help children understand how science can affect real lives without losing sight of the human story at the heart of it. 

Importantly, One Day Soon fills a gap that many families affected by MND know all too well. There are few resources available to help children understand a disease that can change a family forever. 

For Cristy, sharing the story is also about encouraging conversations. 

"Sometimes just being able to talk about it is so valuable," she says. "Someone who can sit in that space with you is so important." 

The novel's unique verse format makes complex emotions and experiences accessible to younger readers. It allows children to journey alongside Alex as he grapples with uncertainty, fear, hope and love, all within a story that can be read in just a few hours. 

At its heart, One Day Soon is not a book about dying. It is a book about living. 

"We're all obsessed with how long we're going to live," Cristy says. "But are we actually enjoying the journey?" 

For families affected by MND, that message may feel especially familiar. 

Through Alex's story, One Day Soon reminds readers that while none of us can know what tomorrow will bring, there is joy to be found in the moments we share today. 

One Day Soon by Cristy Burne is published by Fremantle Press and is available through major booksellers across Australia.