His dad is helping uncurl his fingers so they can get a good handprint; Regan’s little fingers looking impossibly small against his.

There’s smiles all round. Success.

They’re making memories, as quickly as possible, because nine-week-old Regan is dying.

They don’t know when, but there’s no time to waste, today could be his last.

Regan, who was born with a congenital heart condition, has had two open heart surgeries and there was hope after the second operation.

He even started to gain weight and grow.

But just weeks later Regan’s health deteriorated and after a third operation, doctors at Westmead Hospital gave his parents the worst news possible, that there was nothing more they could do for their little boy.

At the weekend Ryan and Kirstin Haran made the difficult decision to remove the tubes that were keeping him alive and spend whatever remaining time they have with him at Bear Cottage in Manly, on Sydney’s northern beaches, the only children’s hospice in NSW.

Now it’s Wednesday and they are getting images of Regan’s hands and feet as well as creating a fingerprint family tree.

The couple from Bargo, and their other son Lewis, 4, who only met his baby brother for the first time a couple of days ago, are all being accommodated at Bear Cottage, and so too are the grandparents.

“When there were glimmers of hope for him we had planned to go on a holiday when he was well enough” Ryan said.

“This will have to be our family holiday now.

“We went into Manly yesterday, it was beautiful.”

Bear Cottage is all about creating special moments and memories that families can treasure long after their loved ones have gone.

Along with the art therapist, there’s a music therapist who can record Regan’s heartbeat and incorporate it into a piece of their favourite music, so they can listen to it after he dies.

A child play therapist will also work with Lewis, because siblings also need support in times like these.

Then there’s Beau, the hospice’s therapy dog, who is regularly available for much-needed cuddles for anyone who needs one. He gets plenty.

Nursing manager Narelle Martin has worked there 20 years and says people are surprised when they come to Bear Cottage because it is not what they expect.

“It’s full of laughter and love and life, actually,” she says.

“We often say that children don’t come to Bear Cottage to die, children come to Bear Cottage to live.

“And, it may only be for a short time, but we want to make every moment count and ensure that the family can have some positive memories.”

“We see anything as possible,” says Narelle. “We’ve actually had a couple of children that have been down at the beach and died. It’s been beautiful really for the families.

“Sometimes we’ll decorate a child’s room with fairy lights, so it’s like they’re in a fairyland.

“Other families might want to be out under the trees.

“I guess it’s about trying to normalise death and yes, it’s never going to be easy, it’s always awful, but it’s about trying to make situations the best they can.”

In September, staff helped carry Christian Adamski, 8, who they called their “little gardener” because he loved being out in nature, into the garden on an air bed so he could spend his last moments outside.

With his parents and sister by his side, Christian, who had brain cancer, died peacefully, with fresh flowers in his hands.

Before children die, staff do what they can to fulfil their last requests.

The hospice has had visits from a wide variety of animals including a horse and snow was even conjured up on a summer afternoon, thanks to the efforts of a staff member who managed to source a snow making machine at short notice.

They’ve organised a ballet lesson for a child and a fairy tea party.

Staff at Bear Cottage form bonds with some of the children over months and in some cases years and say they feel like they become part of the family.

Gy Ho, 36, is a child therapist at Bear Cottage and remembers one patient, who he got to know over a long period of time, who loved practical jokes.

“Every time he came in I’d toilet paper his bedroom, you know, set it up with pranks, he loved it,” he says. “Even at the very end, if I did that I could see the smile in his eyes, even though he couldn’t move his arms or legs, or respond much anymore.”

After a pause he says, “It’s so amazing how tough they are — they’re brave”.

“Working here keeps you grounded, you know, makes you thankful for the simple things in life.

“I certainly don’t complain as much as I used to. I get cranky with friends sometimes if they get upset about the little things.”

Gy uses play to either entertain children, distract them from a medical procedure or help them understand what is happening to them.

“If I can make one child smile for a second a day, that means a second of their day has been better than what it was previously,” he says.

“We know the ending and we can’t do anything about that.

“So let’s make this journey for that child and their family, as best as possible.”

Oscar, 6, has severe cerebral palsy and lives with his adoring and devoted foster mums Ally and Janet Tanner, on the Central Coast.

For them Bear Cottage is an opportunity to catch up on sleep, because Oscar needs 24-hour care.

“We kept saying no when we were offered respite care at Bear Cottage because we thought he was not at that stage,” says Ally, 54.

“Then I realised we needed it after I fell asleep at a set of traffic lights driving him home from therapy and that scared me.”

Even though Oscar is non-verbal, the staff have learnt how to communicate with him and understand his needs. They take the time to deck out his room before he arrives with his favourite cars, movies and cushions.

He is fiercely intelligent and needs to be challenged, something staff didn’t quite appreciate at first, until his parents explained that he watches his favourite movies in French and that while he can’t talk he has developed his own sounds for numbers when he counts.

“Each time we come here, we wonder whether it is the last time,” says Janet, 41.

“We’ve had to consider a funeral plan three times so far.”

Fiona Gould, 43, is mum to Archie Innes, 3, who was born without eyes and severe to moderate hearing loss, but is never without a smile on his face.

She lives just a few kilometres away in Beacon Hill on Sydney’s northern beaches and feels comfortable to leave him with staff for a day or two or even a couple of weeks, because she knows he’s in safe hands.

Today, she’s been at home playing her own music and having time to herself, as well as doing a bit of Christmas shopping.

“A lot of people think it is a sad place, it’s not,” she says. “It’s magical.”

“It’s a place where children are celebrated, where children’s dreams come true, where families are supported with palliative care to make end of life plans as dignified as possible.

“We’re blessed to be able to come here.”

Ms Martin — a mum of four grown up children — says her work at Bear Cottage has had a positive impact on her family, who are more aware than most of the difficulties other people face.

Since becoming a grandmother herself, she realises how tough it is for the grandparents of Bear Cottage children too.

She admits having seen so many children die young, it makes her worry about the youngest members of her family, “a little more than I should”.

She says she does the job because it is a privilege to meet these families, who ask for nothing other than some quality time with their sick child.

While it is a job, losing a child can still hurt. A debrief and candlelight ceremony to remember each one is a chance for staff to talk about how it has impacted them.

Knowing they’ve made their lives the best they can be is what keeps them going.

Around 1200 children have come to Bear Cottage since it opened and more than 600 have died there in that time.

On the walls of the hospice are all their photos.

Narelle has a story about each one.

Her eyes move slowly over the photo board and points to one child and smiles, remembering their love of chicken crimpys - so much so that she was buried with a packet of them - and another who loved water pistols which he would often use on staff when they came into his room.

She doesn’t have favourites, “You can’t pick,” she says.

“If you have children yourself you don’t say, ‘Oh, this is my favourite’. Each child is unique.”

Bear Cottage relies on donations to provide the extra services they need for children.

To donate go to bearcottage.chw.edu.au.