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Family stories

Liz, Matilda and family

Matilda lives with her mum Liz, father Jeremy and younger sister Rose in Ermington, NSW. Liz talked to BDRSA in May 2019 about life with Matilda, who has been diagnosed with CLN2.

Julia, Emily and family

Emily lives with her mother, Julia, father Andreas, and older brothers, Benjamin and Alexander in Sydney, NSW. She is legally blind and has juvenile Battens disease, or CLN3. Her mother Julia talked with BDRSA in May 2019 about their lives together.

Fiona, Max and Abigail

Fiona cares for her son Max, who has CLN2 and was 12 years when BDRSA caught up with them. They live on the NSW Central Coast with Max’s younger sister Abigail.


Harry tells his story of healing after the death of his son, David.


Hamish and Peta share their experiences of grief and resilience following the death of Mia.

Memorial gallery

These are some of our brave children who lost their lives to Batten Disease. Their childhood was limited and a battle was endured, but in spite of everything, their smiles continued to shine. If you live in Australia or New Zealand and would like your child to be added to this gallery, please contact us.

Jordan Anderson

Tilda Berger

Sam Brinin

Bryce Colbert-Daley

Tobin Dougan

Tori Evans

Mackenzie-Rose Foster

Jacob and Sara Goodlet

Chloe Hampson

Marsden Hill

Sheree and Sonya Kur

Jai Seychell-Longfiled

Michael Murnane

Tyrone O'Neil

Kyle Oliver

David Partridge

Haylee Prater

Jack Sidiropoulos

Shania Smith

Soibhan Sowry

Louise Taylor

Joshua Ward

Rachel and Alison Warren

Sam and Joey Wright