Fun is not really a something we associate with children's wards, but that's the word that comes up again and again in relation to Starlight.
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The Starlight Children's Foundation bring joy and laughter into children's hospitals around Australia, through bedside visits from Captain Starlight, and Starlight Express Rooms (SER) - a medical-free escape filled with games and activities.
Their annual fundraiser is Starlight Day, held tomorrow, Friday, May 1, and they need support to continue to be lifelines for thousands of families, such as the McLennans of Queanbeyan and the Chapmans of Goulburn.
"William's always asking when they're coming," said mum Naomi McLennan, who - along with dad Ben - has been at both Centenary Hospital for Women and Children in Canberra and at the Sydney Children's Hospital in Randwick at least every four months for the last two years.
That was when William, now four, was diagnosed with spinal muscular atrophy. (You can follow his journey here.)
"The room lights up when they come in and William's instantly smiling. They do games and activities, decorate the room, and bring a lot of energy."
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For parents, the visits and the safe haven of the SER provide a sense of relief.
"If you need a bit of time out there's a room there you can have a cup of tea and know you're not alone," said Naomi.
SMA is a degenerative disease with no cure, and parents Naomi and Ben have had to watch their son slowly lose the ability to do the things he use to be able to.
A cheeky, happy child who loves being with people, Naomi says he's been incredibly resilient, despite no longer being able to walk or crawl.
He suffers frequent chest infections, so the coronavirus pandemic has made things especially hard.
" We have to be super-careful," said Naomi. "My doormat says: if you're sick, don't enter!"
So does six-year-old Madilyn Chapman, who is battling acute lymphoblastic leukaemia.
"We've been fully isolated since March 16, when we pulled the kids out of school," said her mother Alison.
"Her first time out of the house since then was this week for blood tests."
When Madilyn was just four years old, she was admitted to hospital with suspected tonsillitis - but little did her parents mum Alison and dad Matthew expect a diagnosis of leukaemia
For the first four months following Madilyn's diagnosis, the family had to uproot their life in Goulburn to be closer to Sydney Children's Hospital.
One bright light amid the family's trauma was being able to play games and have fun with Captain Starlight in the Starlight Express Room.
"From the word go, Starlight people were there," said Alison.
"While we got the news that she had leukaemia, they were there for support for the kids, trying to keep them occupied while we were getting the news, helped them deal with it. They've had an impact on whole family, not just Madilyn.
"If she has a temp she's in isolation, but even in there they'll come in with a mask and bring activities so she feel like a child again, which is so important. Because it's taken her childhood - she's gone from a baby to a big girl. She just has to cope."
This Starlight Day, Starlight are hoping to raise over $250,000 to give fun and happiness to over 5,000 sick kids.
To make a donation today go to starlightday.org.au, with all donations made before midnight Sunday, May 3 generously double-matched by four Starlight partners, including Spotlight and NAPA.
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