A publication of the Centre for Advancing Journalism, University of Melbourne

‘The Forgotten Ones’: the ripple effect of childhood illness

A new exhibition focuses on the siblings of Australian children with rare diseases.

Video by Kate Stanton

Australian photographer Alexandrena Parker, 26, was born with cystic fibrosis, a rare and life-threatening genetic disorder that affects the lungs and digestive organs.

She often wondered what her illness meant to her two younger siblings, whose childhoods would have been affected by the chaos of constant medical attention and requent hospital stays. 

“This concern got me thinking about other families in similar situations,” she says. “I decided I could use my photography to shed light on this particular aspect of the rare disease community.”

She teamed up with Rare Voices Australia to capture portraits of young Australians whose siblings suffer from a rare disease, such as Batten disease, Rett syndrome and sickle-cell anaemia.

Ms Parker’s sister, Josephine, and brother, Billy, also feature in the exhibition. 

“Growing up with my sister meant I observed the vulnerability of life,” Josephine says. 

“When my sister was born she was told that she woldn’t live much longer than 35, however, she is someone who lives with more passion and determination than anyone I know.”

The ‘Forgotten Ones ’ series launched in Sydney last year, with opening remarks by NSW Premier Mike Baird.

It opens in Melbourne on Tuesday, March 1, 2016.

Kate Stanton spoke to Ms Parker about her photographs — and what they say about living with rare disease. 

► ‘The Forgotten Ones ’ exhibition opens Tuesday, March 1, 2016, in Melbourne. 

fortyfivedownstairs Gallery 45 Flinders Lane, Melbourne

Opening night: Tuesday March 1 5PM — 7PM

Exhibition runs: Tuesday, March 1 — Saturday, March 5 11AM — 5PM

► Photographs

Alexandrena Parker, used with permission

► Music

Nevada City, by Huma-Huma

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THE CITIZEN is a publication of the Centre for Advancing Journalism. It has several aims. Foremost, it is a teaching tool that showcases the work of the students in the University of Melbourne’s Master of Journalism and Master of International Journalism programs, giving them real-world experience in working for publication and to deadline. Find out more →

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