Stories from our community
Life with CHARGE
Families from around Australia and New Zealand have shared their stories. Read about their challenges, achievements, and everyday moments.
Life with CHARGE
Determination with CHARGE Syndrome: Sarah’s story
In this video, Sarah and her mum share their story of life with CHARGE Syndrome. You’ll hear Sarah’s determination and sense of humour shine through, alongside her mum’s honesty, love, and advocacy. It’s a heartfelt introduction to CHARGE that helps families feel less alone and more connected.
27 minutes
Children with CHARGE - a film by Rob Last
Rob Last AM captured a record of eight children who had been diagnosed with CHARGE syndrome. In 1993, he filmed these eight young people and followed their progress again in 2000 and 2007.
These extraordinary people are: Anthony, Julia, Yasmin, Brianna, Talisa, Ellen, Sophia and Andrea. In 1993 he focused on their communication and gross motor development, and in 2000 and 2007 he focussed on broader issues. He captures their spark, their skills, their challenges and we hear about their hopes and dreams for the future.
All of the eight short videos are available on You Tube.
You taught me
A collection of stories providing a unique insight into how people with CHARGE syndrome have lived their lives and how they have touched the professionals who have worked with them. The stories are of individuals with CHARGE syndrome from around the world.
Author: Andrea Wanka
Share your story
We’d love to hear from you! Whether you’re living with CHARGE, a family member, or a supporter. Share your CHARGE journey with us so others can learn, connect, and find hope.