Parents fight to keep their daughter Sian Grahl’s dying wish to have an adult Bear Cottage alive

THE   mother of a young woman who died from symptoms relating to spinal muscular atrophy is fighting to fulfil her daughter’s final wish to have an adult Bear Cottage.

Sian Grahl's mother Marita Murphy has started another push for an adult hospice care at the Manly Hospital site. Picture: Adam Yip.

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THE   mother of a young woman who died from symptoms relating to spinal muscular atrophy is fighting to fulfil her daughter’s final wish to have an adult Bear Cottage.

Frenchs Forest resident Marita Murphy and her husband Bo Grahl will host a photography exhibition this month using the works of their daughter Sian Grahl, who died aged 25 in November..

Sian Grahl during a photoshoot. Picture: Supplied.

Bear Cottage in Manly is the only children’s hospice in NSW, but when the terminally ill children turn 18 they have nowhere to go outside of hospital and the aged-care system.

The proposal for an adult hospice, originally floated by Bear Cottage’s nursing unit manager Narelle Martin, had gained the support of then-premier Mike Baird in August last year.

At the time, Mr Baird said he believed part of Manly Hospital could be used for a “Big Bear Cottage” when the Northern Beaches Hospital was complete in 2018.

“I am a nurse and Sian had the privilege to live at home and die at home,” Ms Murphy said. “If she was someone else, she would have had to be in a hospital most of the time.”

Her parents will host an exhibition called Phoenix filled with Sian’s photographs which are “about dying, and the journey you go on through death”.

“Sian’s exhibition documents her emotional voyage of near-death experiences in her last year of life and the knowing that comes from understanding and accepting death is imminent but that the human spirit defies its limitations.”

Bo Grahl and Marita Murphy with their daughter Sian Grahl. Picture: Supplied.

They have invited Premier Gladys Berejiklian and Health Minister Brad Hazzard to the event’s launch on March 23, and have called on them to honour the wishes of Mr Baird.

“Bear Cottage saved us so many times, it was the only place you could take them and didn’t have to worry — and not having to worry is the one thing you could never do,” she said.

“It is a silent suffering. You don’t walk down the street, you are just at home. Nobody is looking after you, nobody knows what is happening until you are dead.

“There is no facility for an adult. You have to go into an old-age home or hospital, so many of these children live to adults they may live to 35, but as their disease deteriorates, parents get older and they can’t cope anymore.”

THE EXHIBITION:

- Sian Grahl won a number of awards and had planned her first solo exhibition for March 23 at Manly Art & Framing Gallery;

- The opening of Phoenixis at 6.30pm and the exhibition will run until April 6

- Sian left $5000 of her own savings to go towards an adult Bear Cottage, and any funds raised through the sale of Sian’s prints minus costs of the exhibition will go towards the cause

-For more information, contact Marita Murphy on [e-mail]

Sian Grahl painting at her home in Frenchs Forest. Picture: Supplied.

Ms Murphy said the ability to have a Big Bear Cottage was about more than a place for people with terminal illness to go. “It is about trying to save marriages, saving families, helping siblings and the community,” she said. “That is my focus. I don’t have to worry anymore but I know thousands do. I think our society needs this kind of facility. We are trying to cover old-age care, but we are not dealing with this issue.”

In a letter to the Premier, Ms Murphy pointed out that 80 per cent of parents of a child with a severe disability will divorce. “This alone is an enormous social cost; just consider the housing pressures,” she wrote. “Many mothers become sole carers, live in near poverty on social security and are unable to accrue any superannuation for themselves.”