Illawarra siblings rare disorder leads photo exhibition

 Kate Hinchcliff with brother Henry who has a rare stomach disorder. Pictures: KIRK GILMOUR

Illawarra kids Madeleine Saxby, Kristian Krstevski and Kate Hinchcliff all have something in common - they each have a sibling who suffers from a rare disease.

The three have united for a photographic project called The Forgotten Ones which was launched by NSW Premier Mike Baird in Sydney this month.

The project, by Melbourne photographer Alexandrena Parker, aimed to recognise the unspoken support that such siblings provide to their loved ones who are suffering.

The photos of the three Illawarra children were among 16 portraits from 11 Australian families, representing 10 rare diseases.

One of the exhibitions photos.

One of the exhibitions photos.

"I live with a rare life-threatening lung and digestive disease called cystic fibrosis," Ms Parker said. "When I was going through turbulent periods with my health I often worried about how my younger brother and sister felt.

"There's not many resources nor research into rare diseases themselves, let alone support for siblings or families.

"That's why I wanted to do this project - to shed light on the wide community of people who are affected by rare diseases."

Madeleine, 10, and her younger sister Chloe, 6, used to play like any other siblings. But when Chloe was 3½ she had a vomiting virus and within a week could not walk.

The Woonona girl was diagnosed with a very rare degenerative brain disorder, vanishing white matter syndrome.

"When Chloe became ill, Madeleine also lost the way of life as she knew it," mother Nyree said. "Siblings of sick children do get forgotten even though parents try not to let it happen.

"I didn't realise how much Mads was missing out until we took part in this photographic project - she was so excited to be part of something where she was the focus for once."

Six-year-old Kristian, of Flinders, has been by his sister Olivia's side during many trips to hospital to treat her cystic fibrosis. Parents Ellie and Krste enjoyed the chance to see their boy shine in the exhibition.

"It's such an important cause because there are so many illnesses about, and people don't realise how much it affects the siblings too," Mrs Krstevski said.

Kate is only four but she knows her brother Henry, 6, cannot eat certain foods. The Woonona boy suffers from an eosinophilic gastrointestinal disorder which causes his body to attack the food he eats.

"He was not able to eat any food until he was three, before then he could only have a specialised formula," mother Mercedez Hinchcliff said. "Kate has had to stay with grandma or a friend on countless occasions when he's needed to see a doctor or have a hospital stay.

"There's so many siblings who miss out because their parents have to be with their sick children, and it's great this project honours their sacrifices."

Ms Parker now hopes to tour The Forgotten Ones around the country, including regional areas. The project was supported by Rare Voices Australia, a non-profit organisation which supports about 1.2 million Australians living with a rare disease.