What It’s Like Living With A Sibling Who Has A Rare Disease

One of Australia’s most talented children’s photographers Alexandrena Parker launches her latest photographic exhibition this week, The Forgotten Ones, at Customs House in Sydney. “It focuses on capturing portraits of young Australian individuals who have a sibling with a rare disease,” says Parker. “The project seeks to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering.” The series showcases 18 portraits from 12 different Australian families, representing 11 different rare diseases. Born with a life-threatening lung and digestive disease called Cystic Fibrosis, it’s a subject that’s close to Parker’s heart. “As a child I was quite healthy, however every two 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 ups. 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 young sister and brother felt about the whole experience,” she reflects. “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.” We caught up with Parker to find out more. Scroll down to look at some of the extraordinary portraits Parker has captured…

How would you describe yourself?
“I am someone who is passionate, determined, focused, sensitive, vulnerable and confident. I love talking (a lot…too much), listening to music, travelling, being in the company of friends and family and of course photography! I’m a very honest person and I wear my emotions and feelings on my sleeve. I’m incredibly tough on myself but I am also proud of the achievements I have made and challenges I have overcome in my life. I was born in 1989 and grew up on 12 aches in Shepparton, country Victoria with my mum, dad, younger sister and brother. I spent most of my childhood riding horses and playing sport until I fell in love with photography!

You were born with a life-threatening lung and digestive disease called Cystic Fibrosis – can you tell us about this?
Cystic Fibrosis is a life threatening genetic condition affecting primarily the lungs and digestive system. The defective CF gene causes the body to produce thick sticky mucus, which traps bacteria resulting in recurrent infections and irreversible damage. Lung failure is the major cause of death for someone with CF. There are approximately around 3000 people living with CF in Australia. Everyday 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.

Can you tell us about your own siblings and how they supported you?
I am six years older than my sister Jo and 10 years older than my brother Billy therefore I think this age gap made it difficult for them to fully understand my health. When I decided to begin photographing ‘The Forgotten Ones’ project I asked my sister to write down how she felt about growing up with a sibling with a rare disease. This is what she wrote: ‘I was about 16 when I went with my family to visit my sister in the hospital. It was something I was used to but this time I was extremely nervous. She had been in and out of hospital for a couple of months now and the only information I knew about her health was from the anxious discussions I overheard from my parents. I was too scared to ask and no one ever thought to tell me exactly what was going on and so I was left to figure it out for myself and I started to worry. I went to school, sitting in class thinking about my sister in hospital suffering alone. I would lie in bed at night thinking and worrying about whether or not she would recover…but I had created a situation that was much worse than reality. Since then I’ve learnt to speak up a lot more and not keep everything to myself but it would have been nice to been able to understand the situation properly. Growing up with my sister meant that I observed the vulnerability of her life. When my sister was born she was told that she would not live much longer than 35. However she is someone who lives with passion and determination more than anyone I know. This is why my sister taught me so much about the value of time. Most of us do not see how vulnerable we are because we are not acutely aware of time, but when your life is vulnerable time disappears fast and your forced to notice and take immediate action. I always hope to bring this into my own life.’

What does family mean to you?
To me family means safety. Even at the hardest times in my life I feel at peace knowing that I’ll always have my family to seek advice and support from. Whilst all of my family members have contrasting personalities and interests we are bound together by our core values, our past and our inherent love for each other.

Can you tell us about Rare Voices Australia?
The project has been produced in collaboration with Rare Voices Australia. It aims to strengthen the common voice of people living with rare diseases, raise awareness and demonstrate that rare disease communities extend beyond that of the rare disease sufferer. While rare diseases are made up of small minority groups, collectively the 8000+ known named rare diseases are surprisingly common affecting an estimated 10 % of the Australian population.

Your work captures both the vulnerability and strength of the children…
Living with a rare disease can be both frightening and rewarding at the same time. There are so many unknown and unexplained variable elements that make both the patient and support network vulnerable however these fears also stimulate a great sense of determination, resilience and strength. It’s a fine line to walk and the balance is often difficult to control but it’s what makes living with a rare disease so unique and profound. I decided to use elements of water throughout the portraits to visually communicate these contrasting qualities. The element of water instantly creates a strong mood within the images and this is further enhanced through the black and film or post production. Much of the body language presented in the portraits represents a sense of vulnerability yet the subjects strong and endearing eye contact challenges this idea and forces you to recognise their individual strength.

Name: Milly
Age: 11 years old.
About: Milly’s older sister, Charlotte suffers from Alopecia Areata, which is an immunological disease under genetic control, which disrupts the normal biology of the hair follicle. Charlotte began loosing all her hair at a very young age. Although not life threatening, Alopecia Areata is most certainly life-altering; its sudden onset, recurrent episodes, and unpredictable course have profound psychological impact on the lives of those affected. There is currently no treatment or cure. “I think it would be hard everyday [living with Alopecia Areata] because you would not feel normal… it is important for most girls to have hair because it makes them feel beautiful but really it’s not important,” says Milly.

Name: Emily
Age: 15 years old.
About: Emily’s younger brother, Adam was born with a rare genetic condition called Fabry disease. A person who is born with the defective gene causing Fabry disease cannot produce enough of an important enzyme called alpha-galactosidase A. Due to this deficiency many of the organs within the body are impacted causing life threatening complications worsening over time as the disease progresses. Adam experiences infrequent durations of pain in his fingers, toes and stomach. “It’s hard knowing there is still no real cure for his disease. The only option is quite a life changing treatment which involves fortnightly infusions for the rest of his life…This is a pretty scary prospect for someone Adam’s age,” says Emily

Name: Toby
Age: 3 years old.
About: Toby’s sister, Mia is five years old and developed Batten disease around three years ago. Batten Disease is a very rare degenerative disease of the nervous system, which is fatal and has robbed Mia of her ability to walk, talk and see. Mia also experiences frequent and worsening seizures and in a few years it will take Toby’s beautiful big sister’s life. Toby adores his family and their dog, BonBon. “Mia has batten… I want to ask a different question. Batten is when you can’t walk or talk and people have a tube. I can walk and I can talk,” says Toby.

Name: Madeleine
Age: 10 years old.
About: Madeleine’s younger sister, Chloe 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 two years, which has required major adjustments and changes for the entire family. Madeleine is a beautifully patient sister who plays a vital role in supporting and caring for Chloe. She loves to play sports and regularly volunteers at a local dance school to assist her sister and others with a disability.“Cures for rare diseases are hard to find and there is no government funding put towards my sisters Vanishing White Matter disease. There is not enough money put towards it because not many families are affected, there is not enough money to find a cure for the disease,” says Madeleine.

Name: Billy
Age: 15 years old.
About: Billy’s eldest sister, Alexandrena was born with a life threatening lung and digestive disease called Cystic Fibrosis. The defective CF gene causes the body to produce thick sticky mucus, which traps bacteria resulting in recurrent infections and irreversible damage. Lung failure is the major cause of death for someone with CF.“I think it would be difficult to live with a rare disease because people would have trouble understanding what you’re going through. I wish that people could understand and empathise more. I don’t think people empathise as much as they should,” says Billy.

Name: Kristian
Age: 6 years old.
About: Kristian’s eldest sister, Olivia was born with a life threatening lung and digestive disease called Cystic Fibrosis. The defective CF gene causes the body to produce thick sticky mucus, which traps bacteria resulting in recurrent infections and irreversible damage. Lung failure is the major cause of death for someone with CF. We he grows up he hopes to be a scientist, so that he can make potions. “I would like to invent a machine to kill ‘sick bugs’, so I can make people that are sick better and so they would not be sick for the rest of their life,” says Kristian.

Name: Ethan
Age: 8 years old.
About: Ethan’s sister, Georgia has a rare Chromosome duplication on Chromosome 5. She is the only one in the world recorded with a very specific chromosome duplication combination. This has caused a broad range of symptoms such as developmental disability, obstructive sleep apnea, sight and hearing impairment as well as visible musculoskeletal problems. “Georgia is different and finds it difficult to do some things I can do… I think it’s pretty cool to have a sister like Georgia. It’s like something that is really special for my mum and dad,” says Ethan.

Name: Tayla
Age: 3 years old.
About: Tayla’s older brother, Cameron was born with a rare brain defect called Schizencephaly. He suffers from epilepsy, motor deficits and psychomotor retardation. Cameron requires daily therapy and constant care from his family as well as outside carers. Their family is forced to reapply for carers assistance every 12 weeks despite the fact Cameron’s condition is permanent. “I have to wait sometimes because sometimes Cameron is sick, or he might be having a therapy session. I have to be a good sister while Cameron’s friends (therapist) are over. Sometimes I get to push his wheelchair around too!” says Tayla.

Name: Indianna
Age: 8 years old.
About: Indianna’s eldest sister, Molly was born with a rare genetic postnatal neurological disorder called, Rett Syndrome. It primarily affects the grey matter in the brain and almost exclusively affects females. Molly cannot walk, talk or feed herself and experiences seizures frequently. Despite the fact Molly requires constant daily care her family have had extreme difficulty obtaining funding for a full time carer. “My sister cannot do anything without help and she can’t talk. I love it when she smiles when she is happy but she isn’t able to tell us anything she needs,” says Indianna.

The Forgotten Ones will be exhibited in The Barnett Long Room, Customs House, Sydney. To attend the opening right on Wednesday 13th May, register at https://www.rarevoices.org.au/events/5/the-forgotten-ones  by May 1st is essential. Donations to Rare Voices Australia can be made at https://www.rarevoices.org.au/donations. For more information, go to http://www.theforgottenones.com.au