"It felt like we'd been hit by a bus. I could hear what the doctors were telling me, but it couldn't sink in. My husband went into shock. Our other kids just wanted to know their little sister wasn't going to die." This was the moment mum Alison realised her youngest daughter, Madilyn, was diagnosed with Acute Lymphoblastic Leukaemia at just four years old. Nothing could have prepared the family for the life-threatening cancer diagnosis that altered every aspect of their lives.

Madilyn's only symptom was a high temperature and at first, doctors suspected tonsillitis. Hours later, she was fighting for her life.

"For the first four months we had to uproot our life in Goulburn to be hours away in hospital in Sydney," Alison said.

The youngest of four, Madilyn is a bubbly, switched-on kid who loves horses and riding her bike.

But instead of playing outside in the fresh air, she was in the scary, unfamiliar world of hospital enduring gruelling rounds of treatment.

"It breaks your heart when you can't take their pain away. It's awful when they ask, 'Mummy, why did I get this?' or say that they hate you because you help the doctors give her treatment - because to a four year old, they don't understand why the disgusting tasting medication is important," Alison says.

One bright light amid the family's trauma was having Starlight in the Sydney Children's Hospital at Randwick.

In the Starlight Express Room, Madilyn would forget she's sick and acts as a child again. I don't know how we would have got through those stressful months in hospital without the Captains.

Madilyn's mum, Alison

"All my kids begged us to go to the Starlight Express Room every time they visited the hospital," Alison says. On days when Madilyn was too sick to leave her hospital bed, Captain Starlight visited her on the ward with her favourite unicorn craft.

Madilyn still visits Sydney Children's Hospital every two months for ongoing tests. She misses out on lots of everyday activities like enjoying play equipment due to germs. "I dread seeing the numbers 38 come up on the thermometer during her temperature checks knowing that means Madilyn has picked up another bug and needs to spend at least 48 hours in hospital again." With hospital remaining part of family life, Alison is so thankful Starlight is there for them.

It's so important that Starlight Express Rooms stay in hospital. Kids light up as soon as they enter the room. It's their safe zone - free from needles and medication and they feel at peace inside those doors.

Madilyn's mum, Alison

"Starlight gives families relief and hope. We will always be grateful for Starlight."