
When Rebecca Conci is asked what is is like to have two children dying from the same undiagnosed illness, she uses the words 'unimaginably frightening'.

'Having a child, or two children, who are so seriously sick is unbelievable. It's terrifying,' she told Daily Mail Australia.

The Victorian-based photographer has three daughters. Two of them suffer from a genetic disease so rare no doctor at the Royal Children's Hospital in Melbourne, or overseas, can explain it.

The family knew something was wrong with their eldest daughter Jennifer, 11, who goes by Jenna, when she was just two years old.

Rebecca Conci's daughter Jennifer (pictured), 11, is suffering from a mystery illness. This heartrending photograph recently won an award at the AIPP Awards in Victoria

There are a multitude of symptoms that Jenna suffers from and something as simple as a cold could spell life or death for her seriously low immune system.

She is so malnourished the young girl has to be fed through multiple tubes in her body and she is so photosensitive to light that going out into the sun leaves her with burns.

All that is known, is that the young girl has a form of genetic disease effecting multiple organs that doctors have never seen before.

'Jenna is on a lot of medication to get her through each day. It has been touch and go with her condition many times,' Ms Conci said.

But if that isn't enough for one family to bear, Ms Conci's middle child Jaydalee, or Jayda, as she is known, has the same seriously life-threatening mystery illness as her sister.

Jayda, eight, was tested at six months old after a high fever and seriously low immune system didn't 'add up' to any commonly known disease. It was then that doctors confirmed the genetic link between the girls.

Because of their ongoing genetic disease both girls have hit end stage liver failure and required two transplants in the past 16 months. But they almost didn't qualify for one.

'We were told in March 2015 that the girls wouldn't receive a transplant. They couldn't say for sure that replacing their liver would help them get better and because there is no diagnosis they just weren't positive this was an option for them.

But if that isn't enough for one family to bear, Ms Conci's middle child Jaydalee (pictured), or Jayda, as she is known, has the same seriously life-threatening mystery illness as her sister

'But if it wasn't for the transplant they wouldn't be here,' Ms Conci said.

Jayda's condition has slightly improved since the transplant 14 weeks ago and she has had her nose tube removed. But Jenna, who doctors consider to have the 'stronger' gene, is still very ill.

'The Royal Children's Hospital has some of the best doctors and surgeons in the world. We've had the girls DNA and skin sent to other medical practitioners overseas and they've been brought up at conventions and been involved in studies.

'Nobody can give us a final answer,' Ms Conci said.

At present both girls are at home with the rest of their family, an occurrence so rare Ms Conci is enjoying every moment.

'I can't remember the last time the girls were home for longer than three weeks at a time. It has been years,' she said.

Ms Conci remembers hearing that her third daughter wasn't ill and feeling a mix of emotions.

'I'm thrilled she doesn't obviously but I'm also emotionally confused. This separates her from the other two,' she explained.

'She has to watch them go through unbelievable pain and be completely removed. Her sisters have to watch her live a healthy life.

'She's just on a completely different path.'

Ms Conci has been a photographer for years but had to stop when her daughters got sick because she couldn't commit to any clients - instead of photographing other people she decided to turn towards her own family and document their journey

Ms Conci has been a photographer for years but had to stop when her daughters got sick because she couldn't commit to any clients.

'We were just in hospital too much and it was always touch and go with their health. I decided to step back,' she said.

Instead of photographing other people she decided to turn towards her own family and document their journey.

Three of her photos were entered into a Victorian photography competition in 2017 and won for their heartbreaking display of real life.

One of the confronting photos shows 11-year-old Jennifer with tubes spiralling in and around her small body.

'I try to be a really positive person but this is our reality. I share some of my pictures on Facebook to raise awareness about organ transplant and undiagnosed illness in young children,' said Ms Conci.

Ms Conci will release a book later this year, Undiagnosed, Through a Mother's Eye, about her daughter's condition with proceeds going towards making unique 'liver bears' to be given to kids at the Royal Children's Hospital in Melbourne after they receive a liver transplant.

'What these kids go through is just truly unimaginable. I wanted to help in any way I could,' Ms Conci said.

You can visit the girls GoFundMe link by clicking here.