In a Palm Beach holiday unit where oxygen tanks neatly line the wall, five-year-old Kyran Dunlop lets out a loud, elongated yawn.
While some parents might admonish their children for such a noise, it is a sound like this that Kyran's mum Carissa cherishes from her non-verbal son.
"When you hear sounds and you know that those sounds are going to go one day? They'll always ring in your mind," Ms Dunlop said.
Kyran lives with Krabbe disease, a rare genetic disorder that impacts the brain and nervous system and usually results in death by the age of two.
His health journey began when he had an anaphylactic reaction to some yoghurt at six months old.
Three months later, the toddler was diagnosed with the disease and was moved into palliative care.
"Usually between 18 months and two years is the life expectancy," Ms Dunlop said.
"As a mum, as a dad, as a family — you can't go through anything worse.
"But we've had time to be able to go, 'alright it is really sad ... but we can't waste his life by being sad'."
Ticking items off the bucket list
Kyran is one of an estimated 5,700 children living with a life-limiting condition in Queensland.
The paediatric palliative care unit at the Queensland Children's Hospital estimates up to 80 of those children will die this year.
No-one could ever accuse the Dunlop famliy of six of wasting time.
They are often on holiday, ticking off another item on their bucket list.
Despite using a wheelchair, a feeding tube and oxygen tanks, little Kyran has done more living than most other kids his age.
"We try and get everything sorted so we can say 'Kyran's done all these things, and we've done all these things as a family'," Ms Dunlop said.
"We're getting out ... [we've been] on a plane, we've been on a boat, we've been camping."
Walking alongside families to minimise suffering
The family make the most of every moment they have together with the support of the paediatric palliative care team at the Queensland Children's Hospital.
The team, led by Anthony Herbert, help families "do as much living as they can before that time comes".
"What we can do is walk alongside families and try and minimise the suffering when it's occurring," Dr Herbert said.
He said the palliative team also help the family achieve their goals and see "moments of joy in the journey the families are going on with the child".
Palliative care starts at the time of diagnosis and carries on throughout bereavement and after death.
Hummingbird House is Queensland's only children's hospice that provides end-of-life and after-death care, as well as respite for sick children and their families across the state.
Located in Brisbane's north, the home provides patients and families with a medical team of doctors and nurses, art and music therapy and in-house chefs.
Hummingbird House's in-hospice lead Andrea Coe said the centre gave families a choice, so children did not have to die within the walls of a hospital.
"If a family chooses to come and stay at the hospice for a respite stay or end of life or for a crisis stay, their whole family is welcome and sometimes that's including the dog," Ms Coe said.
When the time comes, families are given the space to say goodbye to their child without being rushed.
"If the family chooses to stay in the hospice, we can support that for about three to five days afterwards," Ms Coe said.
"It gives the chance for grandparents and siblings and aunties and uncles to say goodbye and have the last cuddle if they want to."
Choosing to die at home
When Andrew Ebringer's ex-wife Sally was diagnosed with throat cancer in March last year, he and their two children couldn't envision a world where she didn't survive.
Dr Ebringer and his son immediately flew to Townsville and moved Sally to Brisbane where she could live in Andrew's home and receive treatment from the Royal Brisbane and Women's Hospital.
After 34 rounds of radiation and chemotherapy, Sally was moved into palliative care at the age of 59.
"It was her choice absolutely to be here, to be in the home," Dr Ebringer said.
"[It was important] to try and have an environment that wasn't hospital-like or hospice-like or sterile and for people to come and visit her and for her to be with her children all the time," Dr Ebringer said.
The family enlisted the help of Karuna Hospice Services, which provides palliative care to patients who wish to die at home.
"They answered all our questions, turned up, gave practical advice and took the medical management piece away so we could focus on allowing Sally to enjoy as much as she could in the final few days," Dr Ebringer said.
CEO Tracey Porst said services like Karuna also supports carers, which in turn better supports patients.
"Our team is on call 24 hours a day, seven days a week, so they can call us at any time, and someone will be there on the end of the phone to support them through," she said.
'Don't wait until tomorrow'
As for the Dunlop family, they believe there's another way to help families in palliative care.
Kyran's dad Cole said talking about end of life helps to reduce fear.
"It's not a scary thing, it's just normal life so you can just roll with the punches that you've been given and move forward."
For families with sick kids, Kyran's mum has one piece of advice.
"If there's something you want to do, don't wait until tomorrow, because you never know if tomorrow's going to happen."
