Grace

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Lucy's daughter Grace was born with a hole in her heart - a shock after a healthy pregnancy.

At just two weeks old, she was airlifted from Darwin to Melbourne's Royal Children’s Hospital for life-saving heart surgery.

Lucy recalls the shock and fear like it was yesterday. Experiencing the cold Melbourne winter felt like a world away from her home in Milingimbi community in North East Arnhem Land.

"It was so scary to be on a plane to a big city. Grace's breathing wasn't good and I was worried."

After her surgery, Grace returned to the NT for treatment at Royal Darwin Hospital.

Sadly, her health worsened, and she developed a persistent cough and lung issues.

Grace in Starlight Express Room

Lucy said during this time, the only thing that made Grace happy was Captain Starlight. She remembers the difference they made when Grace was on the hospital wards.

"The Captains came and sang songs and brought Grace balloons."

Grace with Captain StarlightGrace, now four, loves playing and watching sport (especially AFL) and spending time with her cousins at the beach. She likes to hunt in the ocean for mud crabs and fish. She's affectionately known as the silly one in the family and always likes to have mum close by.

While she still needs regular heart and lung check-ups, thankfully the Starlight Express Room in Royal Darwin Hospital helps the family stay connected.

Whenever Grace is in hospital, she will always go to the Starlight Express Room to have fun with Captain Starlight. Her mum, aunties, uncles and cousins visit too and they love that there's something to keep everybody entertained together.

From Mario Kart for Grace's uncles, to drawing for Grace's aunties and nail painting for Grace's cousins, the Starlight Express Room helps the family enjoy valuable time together when they are so far away from home.

Grace smiling in Starlight Express Room

"The Starlight Express Room helps keep all of us busy and happy - it makes it easier," Lucy says.

Grace also has ongoing clinic appointments at home in community and knowing Captain Starlight will be there with the doctors makes her feel less anxious.

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When I see the doctor's flyers saying they are coming into our community, Grace knows that means the Captain Starlights are coming so she runs to the clinic and waits for them! Captains makes the health clinic so much better for her.
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Grace's mum, Lucy

Importantly, Captain Starlight helps ensure Grace attends her health check-ups regularly - they are her reason for going.

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If Starlight wasn't there Grace would cry and not have her needles and checks ups. She wouldn't go to the clinics. Starlight makes her happy and, if Grace is happy, I'm happy.
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Grace's mum, Lucy

Grace was all smiles when she had her Starlight Wish granted to visit Sydney with her family. Her favourite part was swimming and having fun at Wet 'n' Wild. She also loved all the animals at Taronga Zoo, especially meeting Marley the seal and watching her do tricks - it was her first time seeing a seal and the family's first time in Sydney.

Grace on her Starlight Wish to Sydney

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