While many parents see their toddlers' abilities grow every day, Naomi and Ben watch their son William slowly lose the ability to do the things he used to do.

William and parents

On 7 June 2017 William was diagnosed with Spinal Muscular Atrophy Type 2 (SMA) - the childhood version of Motor Neuron Disease.

"Our lives changed forever that day," Naomi says. "Time stood still, and it felt like the world was closing in and we couldn't escape."

SMA is a degenerative disease with no cure. "You eventually lose the ability to breathe, to swallow, to talk," Naomi explains.

William, now four, is a cheeky, happy child who loves being with people and Naomi says he's incredibly resilient despite everything he goes through.

"He can no longer walk or crawl. His self-feeding has declined, we have to help sit him up, sit him down and roll him over during the night."

William in hospital

The family had to make modifications to their home to support William's everyday needs, and he requires specialist equipment including a power wheelchair, standing and walking frames.

William is treated at both Centenary Hospital for Women & Children in Canberra for clinics, and at Sydney Children's Hospital in Randwick every four months for specialist treatment.

"William needs around the clock care and trying to fit in his medical appointments is difficult and stressful while juggling work commitments," Naomi said. "But this is our reality - hospital will be part of William's life until a cure is found."

She says the hardest part of William's condition is that it's degenerative. "As he gets older, he will ask questions about his disease - why he can't walk or run like other children, why does he have to go to hospital if he just has a cold?"

The family face ongoing anxiety around William's illness, especially with winter coming, knowing how affected he'll be due to his weak respiratory function.

But Starlight is always there helping them find respite, like currently, with William being hospitalised after a fall from his wheelchair broke his femur.

William with Captain Starlight

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The Starlight Express Room brings us so much happiness. It takes our mind off William's treatment and helps us feel connected as a family.
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William's mum, Naomi

Having fun with Captain Starlight helps William laugh and smile on even his toughest days. In the Starlight Express Room, he can draw, colour-in, play video games and be a kid again.

William with Captain Starlight and wearing cape

Naomi said they would feel very alone without Starlight.

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We deal with so much pain and sadness, so having the Starlight Express Room brings us happiness, a feeling that everything will be ok, makes all the difference. Sometimes even if it's just to sit in there and have a moment, the Captains get that. Starlight creates a wonderful distraction from our day to day reality and makes hospital feel more positive.
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William's mum, Naomi

William and mum Naomi

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