But when Niki Markou hears the word, her whole body changes. She sits on the balcony of Manly Adolescent and Young Adult Hospice, holding the hand of her terminally ill daughter Ange Lati.

She looks out at the water, a warm smile across her face, Sydney’s skyline twinkling in the distance. She sighs and sinks deep into the couch.

“It’s relief.”

And it is a relief for the families who visit this centre, the first of its kind in Australia. If it were not for this centre, her 20-year-old daughter, Ange Lati, would be in a nursing home, surrounded by people four times her age.

There would be no balcony to enjoy the expansive views of Sydney Harbour, no warm smiles, and no laughter from the nurses. Only an endless wait.

It’s a bitter winter’s day when we arrive at Australia’s first youth hospice centre. Located at the former Manly Hospital Site at North Head, next to the historic Quarantine Station, the newly constructed hospital is Australia’s first dedicated service for 15 to 24-year-old patients with life-limiting illnesses.

When we approach the $19.5m hospital, the air feels heavy, made colder by what lies ahead. But when we step inside, we are met with a towering technicolour mural. Bubbly nurses bustle past, their laughter twinkling in the air like wind chimes. The air feels ten degrees warmer, and something becomes abundantly clear.

A STORY ABOUT LOVE

This is not a story about death. This is a story about living. About love.

It’s early days at the hospice centre and Services Manager Tayia Yeats says “On average we get about one to two referrals per week. We don’t have a waiting list at the moment.”

According to Tayia, this isn’t surprising. Nearby Children’s Hospice Bear Cottage, which takes children aged from newborn to 18 years old, faced similar issues when they started.

“A lot of people see the name ‘hospice’ and they get a bit scared. Most think of us only being here for those that are at the end of life. But a huge component of our care is actually respite and giving the families some time to step away from just caring for their children, and actually spending time as a family,” she explains.

The eight-room centre has state-of-the-art medical facilities, but it feels nothing like a hospital.

“It’s really tailored around the patient. We try and make it as homelike as possible while maintaining a cool kind of hotel environment,” explains nurse Lucie Appleby.

There’s art therapy, music therapy and expansive games rooms full of the latest video games and movies. Meals are lovingly prepared by a cheerful Scottish chef and served in a cosy living room.

And then, there’s that one thing every 18-24-year-old yearns for, something that resonates within their very core but is seldom found within the confines of a hospital room: freedom.

In a hospital setting, these adolescents would be constrained by rigid schedules. Everyone rises at seven, administers medications, and undergoes their daily shower and physiotherapy routine. Here, they are free to choose their own day.

“Yesterday, patients made pizzas in the kitchen with the chef. They spend a lot of time sitting down with the staff, playing card games. We all have meals together. There’s no set plans for the day,” she said.

Families stay in rooms on-site and have access to social workers, bereavement counselling, clinical psychologists, and psychiatrists. For many, this is their first break in months, and for others, it’s the first time families have had the chance to live together in years.

“We have a family that has been here now a couple of times. Their daughter lives in a group home so they’ve not had the opportunity of her living with them since she was five years old. And she’s now 18 and they’ve come here on two occasions now as a family to actually live together as a family, which has been really amazing,” says Ms Yeats.

And as Niki Markou explains, it’s changed her and her daughter Ange’s life forever.

Ange Lati always loved dancing. She was a “fiercely independent” child who spent her days twirling and singing on stage. She dreamt of becoming an actress and would recite five-minute monologues perfectly.

“She wasn’t an average kid. She was exceptional,” says Niki proudly.

When she was in year eight, everything changed. Ange began stumbling on stage, experiencing fainting spells and seizures, and gradually slowing down academically. Her friends grew frustrated, bewildered by the transformation.

By the time the diagnosis arrived, it was too late. At 14, Ange was diagnosed with Lafora, an extraordinarily rare form of childhood dementia. She is the only person in Australia to have the disease. She was given just ten years to live.

TRAPPED IN HER OWN MIND

When we meet Ange, she is 20 years old, short, spunky and wearing an oversized TLC shirt with “Don’t Go Chasing Waterfalls” emblazoned on the front. But there’s a vacant stare in Ange’s eyes.

The girl who once filmed makeup tutorials and insisted on doing her homework without her mum’s help is today trapped within her own mind. She is a whisper of the girl she once was.

“It was really, really devastating. It took a while to adjust to”. Niki’s eyes dim. “She was perfectly healthy. She was smart. There was nothing wrong with her. And the prognosis is once the onset of symptoms start it’s 10 years until they pass away. So it’s a very short life.”

But in all the darkness, there are moments of light. Lafora might have stolen Ange’s future, but it hasn’t entirely taken her present.

Maybe it’s the water views or the Scottish cook with his booming voice and cheeky smile, but there’s something about Manly Hospice that knows how to weave through Ange’s tangled brain.

“We have relief here … and fun. It’s beautiful. It’s like we have a life now.” Nikki punctuates her sentences with a warming laugh.

“It’s like a family. And that’s what she needs, you know, because she needs that comfort and, you know, especially when you’re scared.”

As Niki explains, one of the most exhausting parts of terminal illness is the constant explaining.

“To go through the public system when her seizures are escalating is very stressful. When we come here they know everything. They know exactly what to do. We can come and I can have a break straight away instead of sitting in the emergency on the plastic chair for 30 hours or trying to squeeze into her single bed and having to re-explain her needs and condition to everyone,” says Niki.

“It’s the first time I have had a chance to sleep through the night by myself. I have been able to spend time with my eldest daughter and partner. It takes the stress away because you’re not feeling helpless.”

Most guests will stay at the centre for one to two weeks, though the stay can be extended depending on their circumstances. They will be referred by their GP or specialist, and the centre takes in patients from all across NSW. In emergency situations, patients can come directly to the centre. They and their families are fed and housed, and the stay is funded by Medicare.

“Part of being part of this place is we’re not just caring for patients, but we’re caring for their family”, explains Tayia.

At times, terminal illness can feel like a waiting game. Waiting for the end. Waiting for the inevitable. But Manly puts a pause on the wait. In this place, so often associated with the end of life, life starts again.

With shiny eyes, Niki describes a moment a few months ago. Ange had suffered her worst bout of seizures yet. Instead of rushing to a public hospital, where they would need to cycle through Ange’s medical history, they came straight to Manly.

“It was so comforting that they all knew what to do here. All the supports are here. All the specialist come here and assess her.”

And when the end does come, Manly is there. Patients and their families have access to a rotation of clinical psychologists, bereavement counsellors and hugs. Social workers and counsellors will help families gather memories of their child, whether that be in the form of a fingerprint, a cast of their hand, or an evening spent dancing in the sunset.

‘SHE IS JUST A 20-YEAR-OLD GIRL’

The centre has taught Niki to prepare for life outside of Lafora. A life outside of Angie.

“They thought of ideas to help us navigate through and helped me prepare for the confronting questions of what comes next. If it’s all over, what do you do with yourself? When you’re a full-time carer and then everything stops, you not only lose a child, which is the most devastating part, but you also lose the carers that you’re with every day, the community,” Niki says.

“Your whole life changes. But they help us prepare, so when the moment comes, you have a plan in place.”

Ange suffered 98 seizures that month. Niki thought it might be the last time she would see her daughter alive. When she miraculously pulled through, Ange was non-verbal and bedbound.

“We didn’t know if she would walk again.”

And then the hospice put on an outdoor concert. In the pinkish hues of the sunset, Ange began to dance in her chair. A huge smile spread across her face and her arms moved in the air. And then she was out of her chair, forget walking, she was dancing. For the first time in years, Ange was back.

“She’s a young adult, she wants to go clubbing. When we had this twilight concert I was holding back tears. I was like ‘wow this she’s finally getting to experience something cool for her age that she can’t do. Normally she’s just too unwell to go out. It was perfect, and she loved it.”

Ange has been silent for most of our conversation. She’s listening carefully, trapped within her mind. Then suddenly, as we discuss her love of footy and a recent visit she had from Roosters captain James Tedesco, Ange comes alive. She bursts into a smile, waves her arms in the air, and she cries, “Roooosters!”. Her room is splattered with pictures of a shirtless Channing Tatum.

To the outside world, Ange is defined by her Lafora. Inside Manly Youth and Adolescent Hospital, she is just a 20-year-old girl. Niki wraps her arms around her daughter. “People feel like it’s death. It’s not. It’s love. It’s caring, it’s happiness. It’s family. You know, it’s love. It’s all love here, there’s nothing else.”

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