Four-year-old Nellie's face lights up every time she sees Captain Starlight in the Royal Darwin Hospital.

Having fun, singing and laughing helps break the boredom and sadness of her frequent stays in hospital a world away from her home - a small community more than seven hours' drive south east of Darwin.

Nellie and Captain Starlight

Nellie was born with the rare condition Congenital Neutropenia - meaning she has no white blood cells to fight infections. To manage her condition, Nellie needs regular antibiotic medication and treatment in hospital every fortnight.

Her mum Desley and dad Laurie said their whole life changed after Nellie's diagnosis. They made the heartbreaking decision to move to Darwin to be near the hospital for Nellie's regular treatment and so that Nellie's oldest brother, Elicko, 14, could go to boarding school.

The family felt split in half and Nellie misses her middle brother, Malachi, 10, who can only visit Darwin every so often to see his little sister.

Nellie, mum and brother

"Before Nellie was sick our family lived in community - a place called Minyerri. Now we live in Darwin and Elicko is also in Darwin but at boarding school. Malachi lives with his aunt and grandma back in Minyerri," Desley said.

Sadly, the family rarely get the chance to get back to Minyerri as their lives are consumed by hospital and treatment in Darwin.

Nellie playing in the Starlight Express Room with Captain StarlightThankfully they have Starlight's hospital programs in the Top End to bring the family much-needed happiness and entertain family when they visit from Minyerri.

Nellie loves visiting the Starlight Express Room to play, paint and colour-in. It gives her a break from treatment and she can have fun and just be a kid.

When her brothers visit Nellie in hospital, they find respite in the Starlight Express Room to break the boredom on the wards.

The boys love challenging Captain Starlight to Mario Kart and other video games to help pass the time.

But it's not just the kids who enjoy the Starlight Express Room - it helps the whole family cope.

Nellie and brother with Captain Starlight

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Starlight helps more than just the sick kids. When my family from community come, they always visit the Starlight Express Room and see the Captain Starlights. I tell other families in hospital visiting from community to come too because it's a place where mothers can relax and feel comfortable too.
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Nellie's mum, Desley

Desley said she can't imagine hospital without Captain Starlight. When Nellie is confined to her bed, the Captains visit her and help distract her with bubbles and singalongs on the ward.

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Captain Starlights are so funny and help the kids to have fun. Without Starlight, we would be stuck in the room with nothing to do. Starlight has done great things for our family. It's nice because it makes me feel less stressed.
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Nellie's mum, Desley

Nellie and her brother with Captain Starlight in the Starlight Express Room

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