Sian Grahl was a talented photographer with several awards to her name. Last year she won a prestigious Life Framer award for her fine-art work, which was exhibited in galleries around the world, including New York, London and Tokyo.

Tragically  Sian died last November. She was just 25.

Sian was born with a rare form of spinal muscular dystrophy and was wheelchair bound from 13. She was immensely active as a photographer. She also found some respite from her crippling condition at Bear Cottage – one of only three hospices of its kind.

At 14, she was given her father's old Ricoh camera sparking her passion for photography.

"There was a darkroom at high school, and she spent so much of her time there," Sian's mother, Marita Murphy said.

"Her face would light up … photography became an expression of herself."

Sian and her family dreaded her 18th birthday – it would be the date when she would have to leave Bear Cottage. There is no equivalent care unit for adolescents and young adults in Australia.

"When Sian turned 18 I broke down and cried, we really had no idea what to do. It was either get her into an aged-care facility or drop everything and become literally a 24/7 carer for my child. There is simply no infrastructure out there for this scenario."

Murphy, a trained nurse, did become a 24/7 carer for Sian, and resorted to sleeping on hospital floors next to her daughter when she had to go in for her many visits.

"There is a lot of unseen suffering behind closed doors … parents and carers struggling to take care of their children and children who aren't able to get out there and experience the world – but these children have voices too, and should be heard," she said. "I am a trained nurse and it was almost impossible, I can't imagine what it is like for regular mums and dads without that specialist training."

Sian courageously fought constant pain to fulfil her artistic vision. 

"For Sian, her art was everything. She would meticulously plan a shoot. I'd have to pump her full of painkillers so she could make it to the end."

Posthumously, Sian will soon have her first solo exhibition at Manly Art and Framing Gallery this month. At her request, all the profit from the sale of her photographs will go into a fighting fund to help establish Australia's first hospice for young adults in the vein of Bear Cottage.

"Sian named this exhibition Phoenix, because of the bird rising out of the ashes. Hopefully her work can do the same, and help keep the dream alive even though she's gone," Her mother said.

Murphy invited NSW Premier Gladys Berejiklian and state Health Minister Brad Hazzard to the launch of the exhibition on March 23, calling on them to help set up such a dedicated young adult hospice.

"Sian bequeathed $5000 of her own money to this cause. We're hoping we can raise enough to make her wish a living reality."