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.
Max and Abby has a Recommended Retail Price of AUD$14.99 (+P&H), however 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.
We also have a limited number of copies that we would like to provide free-of-charge to the wider community on a first-come first-served basis, while stocks last (max. one per order, please).
Books (incl. P&H within Australia) will be provided free of charge while stocks last, however in lieu of purchasing, you may wish to consider making a small donation to BDSRA Australia.
To make a tax-deductible donation, you can donate here.
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.
© Batten Disease Support & Research Association Australia
© Ineka Whiteman, Deborah Moore (illustrations)