For new parents Kylie and Andrew, life was shattered when their six-week-old baby Ellie stopped breathing.
Suddenly their precious newborn was in intensive care on life support due to heart failure.
"We were numb with shock," dad Andrew said. "Kylie had a normal pregnancy with Ellie and the only sign she was sick was when she struggled to feed a few weeks after birth."
Ellie was diagnosed with the rare heart condition Cardiomyopathy.
Doctors told Kylie and Andrew their daughter’s only chance of survival would be a heart transplant. Ellie would need specialist hospital care until a donor was found.
Suddenly, instead of being in her new nursery at home on Sydney's northern beaches, the family had to relocate to Melbourne to be closer to a specialist heart transplant hospital.
Sadly, Ellie's condition deteriorated, and she was attached to a temporary artificial 'Berlin' heart to stay alive.
Kylie describes that time in hospital as agonising as her and Andrew took turns to be by Ellie’s side around the clock.
"Hospital is unrelenting, and we lived in constant fear she wouldn’t make it," Kylie said. "We were grateful for every day we had with her and even threw a party for her for spending 100 days in hospital as we didn't know how much time she'd have left."
To help with the stress and pain of hospital, Kylie says the moments of joy and respite Starlight provide are vital. She said without Starlight, hospital would feel "demoralising."
After waiting nine months came the bittersweet news that Ellie would receive a donor heart.
Following the 16-hour operation and critical days in intensive care, Kylie and Andrew felt like they had their little girl back.
Now, two and half years of age, Ellie has spent more than half of her young life in hospital - 420 consecutive days.
Since their daughter was first diagnosed, the family has had to celebrate many important milestones in hospital including Ellie's first Christmas, Easter and Kylie's first Mother’s Day.
Kylie is no longer able to work as she cares for Ellie, who is delayed developmentally after spending so much time in hospital without social interaction with others her age.
"Ellie was only 11 months old at the time, but she loved all the fun and action of the hospital during Christmas."
Being able to socialise with other families on the cardiac wards who take part in Captain Starlight fun has helped Ellie’s family create happy memories amid so much sadness.
"Those moments of happiness and engagement are so important. There are huge benefits from development and mental health perspectives," she said. 'Cheeky' and 'fun loving' Ellie is now enjoying being able to explore the outdoors and get stuck into her books.
To Starlight supporters, Andrew said, "Thank you. You can't underestimate the value Starlight brings to sick kids and their families - especially to long-term patients where hospital is their second home."
