The Forgotten Ones photographic project focuses on capturing portraits of young Australian individuals who have a sibling with a rare disease. The project seeks to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering. The series showcases 16 portraits from 11 different Australian families, representing 10 different rare diseases.
FortyFiveDownStairs Gallery45 Flinders Lane, Melbourne, Victoria, 3000
Opening Night — Tuesday 1st March 20165PM — 7PM
Tuesday 1st March — Saturday 5th March 201611AM — 5PM
I was born with a rare life threatening lung and digestive disease called, Cystic Fibrosis. As a child I was healthy, however it took a very regimented routine of physiotherapy, nebulisers, exercise, enzyme tablets, antibiotics and hospital appointments to keep me well. As I became older my health began to decline and I was frequently admitted into hospital. I know this was very stressful for my whole family and I often wondered how my younger sister and brother felt about the whole experience. There was always a lot of support for myself and my parents through these hard times, however the challenges and concerns my siblings had were often overshadowed and forgotten amongst the chaos. This concern got me thinking about other families in similar situations and I decided I could use my photography to shed light on this particular aspect of the rare disease community.
There are approximately 1.2 million people directly affected by a rare disease in Australia, however this statistic doesn't take into consideration the parents, siblings and extended family members who are also suffering and supporting in their own unique way. A rare disease is any disorder or condition that is life-threatening or chronically debilitating disease which is statistically rare with an estimated prevalence of 5 in 10,000 or similarly low prevalence and high level of complexity. Whilst rare diseases are made up of small minority groups, together they directly affect around 6-8% of the population. Through the exposure of The Forgotten Ones project, I hope I can demonstrate that rare disease communities extend beyond that of the rare disease sufferer.
The Forgotten Ones was exhibited at Customs House, Sydney on May 13th 2015. Over 300 guests came together to celebrate the launch of The Forgotten Ones and the event was officially opened by NSW Premier, The Honourable Mike Baird.
Alexandrena Parker is one of Australia’s fastest emerging photographers and is well renowned for her extensive work with children’s fashion, editorial and advertising clients across the country. Alexandrena was born in 1989 and grew up in country Victoria, Australia with her parents and two younger siblings. After completing a Bachelor of Arts in Photography at RMIT in 2010, Alex was approached to be represented by The Kitchen Creative Management.
From a young age Alex was intrigued and motivated by the arts and the camera quickly became a way for her to express her creativity. She thoroughly enjoys interacting and communicating with children because of the richness of their reactions and emotions. In both her commissioned and personal works she creates atmospheric and engaging images, using subtle, natural light to recreate the splendour and universal allure of childhood.
Alex hopes to continue shooting portraits for The Forgotten Ones project with the intention to exhibit the series nationally.
Rare Voices Australia is a national organisation advocating for those who live with a rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that supports and 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 provides information to individuals, and links to other rare disease support groups, organisations and international rare disease partner organisations. It advocates for improved quality of life for people living with a rare disease in Australia, support for research and drug development, networking patient groups, raising awareness and other actions designed to fight against the impact of rare diseases in Australia.