Emily with mum LaurenLauren will never forget the terrifying moment she watched her five-month-old daughter Emily suffer her first seizure.

She was rushed to hospital where her condition worsened.

Emily suffered further seizures for 10 days with the longest lasting a harrowing 90 minutes.

Doctors ultimately diagnosed Emily with Dravet Syndrome - a rare form of epilepsy.

The family were given a bleak outcome - Emily may not make it to age six.

"Emily's seizures are all life threatening and range from 3 to 90 minutes long. She's been an ambulance over 60 times," mum Lauren said.

The family live in constant fear of Emily's next seizure which can strike without warning. She's already endured one brain injury from her seizures which has put her behind three years developmentally.

While dealing with one catastrophic condition, the family were hit with another blow.

At 11 years old, Emily was diagnosed with Acute Lymphoblastic Leukemia after waking one morning with severe pain.

"We were already facing one life-threatening condition and Emily had made it to 11 years old despite the odds. So to then be diagnosed with another serious illness was heart breaking. Emily is the only person in the world with both conditions."

Emily was immediately admitted to Monash Children's Hospital and begun intensive treatment, not leaving the hospital for 120 days.

Emily in hospital

She had severe side effects from the intensive chemotherapy and spent many weeks in 1:1 care.

It weighs on Lauren's mind that Emily has a higher chance of relapse due to having Chromosome 21.

Having Starlight in hospital during this agonising time was a "game changer" for Emily.

Captain Starlight brought Emily so many laughs and enjoyment helping her cope with her unrelenting rounds of treatment. She spent hours in isolation, so a visit from the Captains helped break up her day.

Emily in SER

Despite all she endures, Emily is a fun loving child with an infectious sense of humour. When she's feeling well enough, she loves to sing and dance with Captain Starlight in the Starlight Express Room. It's her happy place where she can forget about feeling 'different' to other kids.

Emily with Captain Starlight

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I don't think we would have made it through without Starlight. The chance for Emily to have a release and for me to have a break is huge.
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Emily's mum, Lauren

With Emily's treatment ongoing, the family live in the moment and take it day by day.

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Mentally and financially it is a struggle, so to have positivity, laughter and joy coming from Starlight makes hospital easier. Seeing Emily's face light up, giggle and laugh is a relief - it gives you a moment to forget all the trauma and just have fun.
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Emily's mum, Lauren
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