Max and Abby tells the story of Abby and her little brother Max, who lives with Batten disease, and how dementia impacts her relationship with her brother and parents.
Every three days a child is diagnosed with dementia. Children living with dementia generally require high levels of care which impacts the whole family. This new illustrated book aims to open up honest conversations about childhood dementia and the impact the condition can have on sibling relationships.
Authored by Dr Ineka Whiteman and illustrated by previous Dementia Support Australia (DSA) consultant Deborah Moore, the story is based on the real-life experiences of siblings here in Australia.
Published by the Batten Disease Support & Research Association Australia (BDRSA), with support from DSA and HammondCare, Max and Abby will be available through DSA to support families and their children affected by childhood dementia.
Dr Whiteman, who is Head of Medical and Scientific Affairs for BDSRA and has worked closely with DSA over the past few years, said there was a real need to create more awareness about Batten disease and to provide effective resources to support siblings and peers, including in their school communities. “We hope the book will be an engaging and valuable resource that helps explain and demystify Batten disease and childhood dementia and the challenging cognitive and physical changes that occur in affected children over time.”
For BDSRA Australia President Kate Beattie, the relationship of the siblings in the book is familiar. Kate is mother of two boys, 9-year-old Tom who lives with the CLN2 variant of Batten disease and his 12-year-old brother.
“I think it is an important resource for every parent and every school seeking to support a child with a sick or disabled sibling,” Ms Beattie said. “When Tom became sick, his 6-year-old brother wanted to know when his little brother would get better. As a parent, I didn’t know how answer to that question.
“Max and Abby would have helped me to talk to my older son about Batten disease and childhood dementia – and to start a discussion with him about the very normal emotions and feelings that he, and any sibling in this situation, would experience,” she said.
Batten disease is the most common inherited paediatric neurodegenerative disorder worldwide. BDSRA Australia estimates that there are more than 50 children and young people currently living with a form of Batten disease in Australia.
DSA, a free nationwide service led by HammondCare, has a specialised Childhood Dementia Support team with trained consultants who understand childhood dementia and its related symptoms, the impact on the child living with dementia and their family and carers. It is the only dementia support program in the world supporting families living with childhood dementia.
Working with other organisations such as BDRSA, DSA provides practical strategies and advice to support children living with dementia and their families.
