Charlotte's epileptic seizures strike without warning. One attack was so severe she spent nine days unconscious in paediatric intensive care.
This is the reality the family has faced since Charlotte was diagnosed with Doose syndrome - a rare and catastrophic form of childhood epilepsy, at age two.
The syndrome has no known cause or cure.
Mum Rebecca said at the moment of diagnosis their lives changed forever.
"Charlotte was at daycare when I got a call from the Nurse Manager telling me she'd had a seizure. Suddenly there were ambulances, tests, appointments and doctors; life felt chaotic."
Early on, Charlotte had one or two seizures a day. But tragically, their severity and frequency increased resulting in numerous hospital admissions. Doose syndrome causes sudden 'Drop seizures' which have led to serious physical injuries over the years and Charlotte has had to wear a helmet to protect her head.
Charlotte was also diagnosed with Global Development Delay which her mum says makes it difficult for her daughter to understand her illness. Now aged 12 she can count to 10, knows all the colours, and her favourite phrase is "hello, how are you?"
Rebecca says Charlotte always has a smile on her face, is friendly to everyone and adores her younger sister Molly.
"Charlotte’s favourite thing to do is to go for a walk or go to the shops and say hello to people," mum said.
Whenever she's in Queensland Children’s Hospital, Charlotte loves to say hello to Captain Starlight.
Rebecca said Starlight has helped the family cope with the ongoing stress and anxiety of Charlotte’s condition and treatment in hospital.
"The Captains make Charlotte happy every time she is in hospital. She likes spending time with them in the Starlight Express Room and on the wards. Her face lights up as soon as she spots them in the hospital corridor!"
Captain Starlight gives Charlotte something positive to look forward to and her mum said hospital would be dull and boring without that dose of Starlight fun and laughter. Charlotte loves to dance with the Captains and sing along with them to her favourite song 'Old MacDonald had a Farm.'
"It's so important for sick kids to have that happiness," mum said. "Even when Charlotte's seizures are bad, you can always see her cheeky smile come through. Starlight is one of the most vital pieces of medical treatment out there for these kids."
Nearly every aspect of everyday life is impacted by the constant worry and fear associated with Charlotte's condition - especially hard during Christmas.
Charlotte can need emergency care at any moment and Rebecca has had to call an ambulance on many a Christmas Day. "It's the worst feeling in the world and it's really hard for Molly too. She said to me 'Mum, can't Christmas just give Charlotte a break'."
Rebecca has also had to reduce her working hours as a nurse so she can be there for Charlotte. Family outings are difficult, and Rebecca said the idea of a family holiday felt like a dream.
Until Charlotte was granted her Starlight Wish last year.
Charlotte loves animals (especially Peppa Pig!) so the family chose a special holiday to Sydney to visit Taronga Zoo and the aquarium.
It was a dream come true for them to spend time away together and Charlotte was so excited to see all her favourite animals in person.
But there was one more surprise coming Charlotte's way, when Captain Starlight popped by the zoo to say a big hello!
"Having Captain Starlight surprise Charlotte at the zoo was amazing. It was like a dream, it was unreal. We don’t get to go on many family holidays, so her wish was really special."
Charlotte's wish gave the family vital respite and a professional family photo session in Hyde Park captured precious memories to cherish forever.
Having a child with such a serious life-long condition, Rebecca is so thankful Starlight is there giving the family vital moments of joy and happiness when they need it most.
