Alexandrena's exhibition ‘The Forgotten Ones’ is a personal project that seeks to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering. We sat down with her to talk about her personal experience living with a Rare Disease and how this influenced 'The Forgotten Ones'.  We interviewed Alexandrena to gain some insight on her exhibition 'The Forgotten Ones' and what the project means to her. 

You have been photographing children for many years now and are well established within the children’s commercial photography industry. What do you love most about working with children?

I love the raw honesty and genuine nature of young people. I enjoy interacting and communicating with children because of the richness of their reactions and emotions. I guess the nostalgia associated with childhood in general is something that I'm really drawn to. I enjoy capturing moments that are timeless and familiar, but also aspirational.

How was this different to other projects you have done?

This is really the first ‘project’ I have ever produced. Prior to commencing this project I had always been focused on developing my portfolio with children’s fashion and lifestyle imagery to expand my commercial workload. This is the first time I have produced a body of work with a strong humanitarian focus with the purpose of exhibiting in a public space.

‘The Forgotten Ones’ explores poignant themes, namely young Australian’s living with a sibling who suffers from a rare disease. Can you give us some background knowledge on your personal experience living with a rare disease?

I was born with a life threatening lung and digestive disease called Cystic Fibrosis. Every day I have to take many different medications, perform chest physiotherapy and physical activity, inhale nebulisers and consume a high calorie/high fat diet to maintain my health. The regimented routines can be unforgiving without explanation and sometimes the only solution is to be admitted into hospital for weeks at a time. It can also be quite isolating and frightening to live with a rare disease, purely because of the unknown. I have always been determined not to let CF define me, however as I’ve grown older I have come to embrace my point of difference. I am grateful for the positive and determined outlook on life I have as a result of living with a Rare Disease.

How did this inspire ‘The Forgotten Ones’?

As a child I was quite healthy however every 2 months my mother and father would take a day off work and drive me to The Royal Children’s hospital in Melbourne for regular check up’s. As I became older my health began to decline and I was frequently admitted into hospital and I often wondered how my young 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 that I could use my photography to try and generate awareness and change for all Rare Diseases.

How did you choose your subjects for the series?

I teamed up with Rare Voices Australia to enable me to reach out to families affected by a broad range of rare diseases. Most of the participants have been selected for the project through RVA however a couple of participants have been selected by word of mouth.

Can you tell us a bit about the image of Maddy featured here? What is her story and how did the shot materialise? 

Maddy is 11 years old and has a younger sister, Chloe who suffers from a very rare, genetic and fatal brain condition called 'Vanishing White Matter Disease'. VWM affects the Myelin in the brain and causes the inability to walk, talk or eat as well as blindness, deafness, loss of motor skills, mental retardation, spasticity, seizures, coma and is followed by death often before reaching teenage years. Chloe's health has rapidly declined over the past 2 years, which has required major adjustments and changes from the entire family. Maddy is a beautifully patient sister who plays a vital role in supporting and caring for Chloe. She regularly volunteers at a local dance school to assist her sister and others with a disability. As soon as I met Mads I knew she was a very intelligent, empathetic and sensitive young person. I wanted to capture a portrait that not only represented her physical beauty and strength, but also showed the hardship she has overcome. I captured the portrait of Maddy on 120 black and white film in a shallow lagoon near Wollongong, NSW. 

What would you like to achieve in exhibiting this series? What message are you communicating to your audience?

Through the exposure of ‘The Forgotten Ones’ project I hope that I can demonstrate that rare disease communities extend beyond that of the rare disease patient. It is so important that the greater community is aware, so that we can generate sufficient support as a nation. 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 with around 400,000 children affected, with many of these rare disease patients are dying before their fifth birthday.

What’s next for you and your practice?

I hope that I continue to expand the body of work and exhibit it throughout Australia. I think the project has potential to appeal to many different audiences using many different platforms. I have previously worked on a few small motion clips and I would love to expand my directing portfolio in the future. I am also travelling to Europe in July 2015 to seek out some international clients to expand my commercial workload and build on my existing portfolio.  


'The Forgotten Ones' is will be open to the public:

10am - 2pm

Thursday 14th May 2015

The Barnet Long Room, Customs House.