A sibling journey with Batten disease
“When Max turned 5, he got a shiny red bike with his name on it. But he didn’t get to ride it for long before he started bumping into things and hurting himself.”
Told through the eyes of big sister Abby, Max and Abby shines a gentle light on the challenging topic of childhood dementia and disability, revealing the highs and lows of life as a sibling of a child with additional needs.
Designed to educate, support and illuminate, this contemporary resource also inspires empathy and inclusion among siblings and peers of children with Batten disease and other childhood dementias.
Purchase your copy for AUD $16.66 (+P&H) via Amazon. All proceeds go to BDSRA Australia to support our research and family support initiatives.
Thanks to the generous support of our partners Dementia Support Australia and the James N. Kirby Foundation, BDSRA Australia is delighted to provide complimentary copies of Max and Abby to all families in Australia (current and bereaved) who have been directly affected by Batten disease. To order your copy, click here:
“This treasure targets a group often overlooked when a child has a progressive neurological disorder – the child’s siblings. This book offers support for children who struggle to understand as they watch their sibling lose abilities. I encourage you to share this book with siblings of a child with a severe chronic illness. As a sibling of a disabled child, I know this will be an invaluable resource.”
Laureate Professor Ingrid E Scheffer AO FRS
Paediatric Neurologist; President of the Australian Academy of Health and Medical Sciences
The story of Max and Abby is so close to our family’s journey, it’s mind-blowing. We have read it together as a family several times already. Everything about this book is such a beautiful gift.”
Fiona Hallum, Batten disease parent
Central Coast, NSW Australia
“It's really good!! I wish I had something like this when I was younger. I used to get jealous when my brother got all the attention and I got none. A book like this would have helped me understand a bit more about what was happening to him."
Abigail, 13 years
Batten disease sibling
“This incredible book is one that will mean a lot to our family for years to come! It’s so beautifully written and has allowed us to gently introduce Batten Disease to our 8 year old daughter (sister to a Batten Warrior) in an age-appropriate manner. It’s allowed our daughter to read about other siblings experiencing the same ups and downs she goes through on a daily basis, and has empowered her knowing she is not alone with these feelings or experiences!”
Amanda and Craig Gilpin, Batten disease parents
Pilbara region, Western Australia
Dr Ineka Whiteman is a neuroscientist, consultant, patient advocate and public speaker. An award-winning researcher, Ineka has more than 20 years’ international training and experience in the human brain and dementia.
In 2018, a close friend’s daughter was diagnosed with Batten disease and Ineka felt compelled to learn about this devastating, little-known childhood dementia. She discovered a deep passion for helping affected children and their families.
Now regarded internationally as an authority in Batten disease and childhood dementia, Ineka leads research and medical affairs for several non-profit patient organisations, including the Batten Disease Support & Research Association (BDSRA) Australia.
Deborah Moore is a freelance artist, illustrator and independent publisher. Deborah has had a lifelong interest in the creative arts and she started doing portrait work from the age of 16. She has been involved in both combined and solo art exhibitions and has designed and published her deck of Companion Cards for the Evolving Soul (a set of cards intended to aid personal development).
Deborah’s background includes over 11 years in dementia care and consulting with the Dementia Centre, HammondCare. During this time, Deborah’s creative interests led her to join the Dementia Centre’s design team, and later, the Childhood Dementia Support Program. It is within this space that an opportunity arose to collaborate with BDSRA Australia and combine her art skills with her knowledge of dementia and disability to illustrate Max and Abby.
ISBN 978-0-6455251-9-9
© Batten Disease Support & Research Association Australia
© Ineka Whiteman, Deborah Moore (illustrations)
