A photographic exhibition opening in Sydney next week offers a unique perspective on what it’s like to grow up with someone living with a rare disease.
The Forgotten Ones is a series of portraits of young Australians who live with a sibling suffering from a rare disease. As well as raising awareness of the common challenges faced by the 1 million-plus Australians affected by rare diseases, the exhibition acknowledges and celebrates the often forgotten support that siblings provide to loved ones living with a rare condition.
The project was driven by the personal experience of the photographer, Alexandrena Parker, who was born with a life-threatening lung and digestive disease called cystic fibrosis, Alexandrena recognised that while there was always a lot of support for her and her parents, the needs and concerns of her siblings were often overlooked.
Presented by Rare Voices Australia, the exhibition features black and white portraits of children aged between 3 and 19. Photographed in a cohesive and consistent aesthetic against a black background and/or embodied in water, the images are a poignant body of work that captures both the vulnerability and the strength of the children.
The exhibition will be opened by the NSW Premier, the Hon. Mike Baird, MP.
ABOUT THE PHOTOGRAPHER
Alexandrena Parker is an Australian photographer renowned for capturing raw and honest portraits of children. Alexandrena’s distinctive style of contemporary and beautifully composed images is built into the foundation of her work.
ABOUT RARE VOICES AUSTRALIA
Rare Voices Australia (RVA) is Australia’s national rare disease alliance advocating for those who live with a rare disease. RVA provides a strong common voice to promote health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia. RVA is the unified voice of ALL Australians living with a rare disease.
The series will be exhibited in The Barnett Long Room, Customs House. An opening night on Wednesday 13th May from 6.30pm to 9pm will bring together invited guests, families involved in the project, Rare Voices Australia staff and guests, media and the general public.
Attendance at The Forgotten Ones exhibition is FREE. Donations may be made to Rare Voices Australia.
Following the launch, the exhibition will be open to the general public on Thursday 14th May from 10am to 2pm.
FOR MORE INFORMATION
An interview with Alexandrena offering more insight into “The Forgotten Ones” project can be found here.
More information about rare diseases and the work of Rare Voices Australia can be found on the RVA website.