When Alex Mickler's younger sister Emily was diagnosed with Batten disease at the age of seven, he didn't quite understand what that was.
By the time she was diagnosed in 2017, Emily — who Alex and his family describe as a "friend magnet"— had already become blind, and they had been searching for the cause for three years.
"Mum and dad, they sat down and told us, me and Ben [brother], they explained what it was and what was going to happen to her, and I think that I knew what was going to happen then," Alex recalled.
"But I didn't quite fully understand what it would look like for us as a family and I think that meant I wasn't really prepared."
Batten disease is an extremely rare, fatal and incurable neurological condition where children who had previously been healthy and hitting developmental milestones lose their motor skills, speech, sight and ability to eat.
Children with Batten disease also experience seizures and childhood dementia.
"One of the conversations I have most frequently with parents and families is that trying to explain what's happening to the affected child to siblings and their peers, and other children is very challenging," neuroscientist Ineka Whiteman said.
"It's hard for those children to understand that this was an apparently healthy, typical brother or sister that they had and grown up with for a period of time through their childhood, to then suddenly realise that this child is actually losing the skills that they once had.
"They're seeing severe behavioural changes, cognitive changes, and trying to explain that to children — it's a huge challenge for families."
A creative way to help
Dr Whiteman has written a book called Max and Abby about two siblings, one who has Batten disease.
As part of the process, she interviewed siblings and families of children with the condition, including Alex Mickler.
In the book, Max loses his ability to sing, read books and ride bikes.
Dr Whiteman describes what's happening in his brain using the analogy of garbage trucks failing to take rubbish away.
It also explores the frustration experienced by his sister Abby, when Max misbehaves and isn't disciplined or takes up all their parents' attention.
It's something Alex relates to.
"Max keeps them awake late at night and they're always having to look after him. I relate to this because Emily usually needs 24-hour care, there's always someone there to help her," he said.
"And sometimes that means that mum and dad don't have as much time for me and Ben, which does sometimes feel a bit lonely."
Dr Whiteman hopes the book will help siblings feel less alone in their experiences.
"While that affected sibling suffering from Batten disease might be taking a lot of mum and dad's time and care, spending a lot of time at hospital and really taking a lot of that attention, those siblings are still loved, they still very much part of that family unit."
Bridging tough conversations
For Alex's mum, Julia, the book would have helped not just her children but also their friends, teachers and even some adults, she said.
"A book's less confronting, even a lot of adults we told about the diagnosis … they didn't know how to deal with it and we had a range of different reactions.
"I think a book like this opens up a discussion, it makes it less confronting, you can talk about someone else, rather than that particular child.
"A great thing about books is that you can explore your own feelings through a character and it makes it easier to take a step back from those feelings and talk about it."
The book has been published by HammondCare, which provides specialist support for children with dementia and their families, and is available for free.
While it was written with Batten disease in mind, Dr Whiteman expects it will help families with children with other forms of childhood dementia.
Alex said he hopes the book will help others learning of a difficult diagnosis to know that there are still fun times ahead.
"It does put lots of emphasis on the fact that life is not always easy, but also the fact that there are good times," he said.
"It's brought the family together, because we all have to care for Emily and we work together as a team."
