From a room filled with unopened birthday presents, to framed photos and videos on phones, the Spadafora family's home is filled with sweet and painful reminders of the little girl they lost.
For the mother of five-year-old Rozalia Spadafora, who died earlier this month at the Canberra Hospital, bedtime is the worst part of the day.
"I sleep with the little pyjama that she had on at hospital because that's the only thing I have," Katrina Spadaford said.
"My son, he doesn't even want to come out of his bedroom … he's just distraught."
'No help ever came'
In the days before her fifth birthday, Rozalia became unwell with what the doctor at first thought was an ear infection.
"It was just like a thing that many kids have been through before: a fever, sore throat," Katrina said.
"With antibiotics, within a couple of days she was back to almost her normal self."
But the weekend before her birthday she took a turn for the worse.
She awoke pale and lethargic with a swollen face.
On the recommendation of a doctor, Katrina and her mother took Rozalia to the Canberra Hospital's emergency department.
What followed was a long ordeal, through which Rozalia was left waiting for hours with what the family describe as only the most cursory of examinations.
Even when Rozalia began throwing up, Katrina said their calls for help weren't answered.
"No help ever came," she said.
"My mother went to find more bed linen and blankets."
Emergency helicopter diverted to airport
Eventually the family were told Rozalia had Influenza A, and there was swelling around her heart.
However, because no paediatric cardiologist was available, she would need to be flown to Sydney.
It took several more hours for a helicopter to arrive and, even then, the family were told it wasn't able to land at the hospital because the "tarmac was damaged" and it was diverted to the airport.
Katrina said medical staff struggled to get monitoring equipment to work so Rozalia could be driven to the airport.
But by then it was too late. Rozalia went into cardiac arrest.
"Her eyes rolled back and I could tell that that was it," Katrina said.
"They rushed me, my mum and my dad out of the room.
"They came to give updates while they were doing [cardio pulmonary resuscitation] — giving us false hope. I knew it was false hope.
"They tried for about an hour but they couldn't bring her back — she passed away."
Katrina said they had around 20 minutes with Rozalia's body before police arrived to take statements.
The family were left in shock, but Katrina said they weren't contacted by the hospital until the day that ABC News reported a coronial investigation was underway.
Katrina said the family has serious concerns about Rozalia's treatment in the lead-up to her death.
"I want to know what exactly happened," Katrina said.
"When did they know my daughter was that sick and why wasn't I told?"
"And I want to know why we don't have the equipment here to deal with these problems.
"Why do we need to go to Sydney?
"We're in the nation's capital – this is a joke.
"No other family should have to go through this.
Canberra too small for some specialised services, Chief Minister says
Speaking on ABC Canberra on Friday, Chief Minister Andrew Barr said attracting and maintaining specialist medical services to the capital was difficult, given the ACT's population, compared to that of Sydney and Melbourne.
"That is a reality of a city of 450,000 people as opposed to a city of five million people," Mr Barr said.
"The range of health services is always going to be larger [in bigger cities].
"There are certain things where even Australia, with 26 million people, is too small to be able to sustain really highly specialised services for very rare health conditions.
"We're all very, very sad about that news [of Rozalia's death] and obviously we'll take any recommendations from a coroner with the utmost seriousness."
Health Minister Rachel Stephen Smith also offered condolences this week and said staff involved in the incident were being supported.
Katrina said her family had received no direct correspondence from the government.
In the aftermath, they are left with the birthday presents Rozalia was too unwell to open, the day before her death.
"I have to live with this and I'm not getting any support. I didn't receive a phone call," she said.
An investigation by the ACT Coroner has been launched.
