Not long after celebrating her first birthday, Charlotte became unwell with a common cold.
Within a matter of days, she would be fighting for her life.
As her parents Simone and Daniel watched their little girl deteriorate rapidly, Charlotte was rushed to paediatric intensive care.
“It was so frightening. We felt helpless seeing her hooked up to all those machines,” her mum said.
After 2 weeks in PICU and with Charlotte’s body shutting down and her oxygen levels dropping, the family were fast running out of options at hospital in Adelaide.
Her parents were told the only option was to fly Charlotte to the children’s hospital in Melbourne for a specialised form of life support called ECMO.
A team of surgeons and nurses connected Charlotte to the life support in Adelaide late in the evening before accompanying her on a Royal Flying Doctors flight while her distressed family followed shortly behind on a red eye the next morning.
In hospital in Melbourne, Charlotte was diagnosed with a severe form of pneumonia and spent the following month on life support.
“Those early days when Charlotte was first sick feel like a blur. She spent 118 days in hospital having so many different surgeries and procedures that we honestly lost count,” Simone said.
One of the risks of ECMO is blood clots and sadly, Charlotte suffered a large stroke which resulted in right-side paralysis and Cerebral Palsy. Doctors later discovered that Charlotte is immune compromised, due to a specific antibody deficiency, which led to her rapid deterioration.
Charlotte endured countless procedures including ventilations, dialysis, chest drainings and open-heart surgery for a central cannulation insertion following her stroke, emergency surgery on her lungs, and tracheostomy.
Simone and Daniel said the impact on family life was enormous.
“Our son Sam was seven at the time, so we pulled him out of school so we could all be together as a family in Melbourne while Charlotte was literally fighting for her life as we were told it would be an extended stay if she was to survive.”
It was during this traumatic time that the family first discovered the Starlight Express Room when a staff member in hospital suggested it to Sam.
Simone said after one visit he never looked back.
“The Starlight Express Room absolutely made his day. Whenever we needed a break from hospital life, we’d visit and it brought smiles and a little light into our lives during a very difficult time.”
After agonising months away from home, Charlotte was eventually stable enough to return to hospital in Adelaide - but the relentless medical schedule continued with her mum and dad taking turns staying with her round the clock.
In the five years since, Charlotte’s life has been filled with therapy appointments, including speech therapy, OT and physiotherapy to help build up strength in her right leg and arm.
She’s also regularly back in hospital for Botox injections into her muscles under a general anaesthetic.
“To say she doesn't like going under an anaesthetic is an understatement,” Simone says. “Every procedure causes her so much stress. Thankfully, the Starlight Express Room and seeing the Captain Starlights helps bring a little sunshine back into her day.”
Charlotte loves anything creative, so there’s always something fun for her in the Starlight Express Room. Simone remembers the joy on Charlotte’s face when it was Lego day in the Starlight Express Room - the fear and worry of hospital suddenly felt like a world away.
“The Captain Starlight surprised her with a Lego set to take home and she felt so lucky. They are amazing at turning difficult days around.”
As Charlotte has got older, she’s found it hard not being able to keep up with her peers.
“She wants to participate in the same way as her friends, but that's not always possible, but she still does her best, in her own way.”
Twice a year, Charlotte also undergoes serial casting, requiring weekly changes to plaster casts on her legs. Seeing the Captains in the day surgery waiting rooms with their ukeleles and singing songs always brightens Charlotte’s day.
The family has adapted to juggle the demands of daily life, managing work schedules around ongoing medical appointments.
Amid so much strain and anguish, the family had the exciting news that Charlotte had been granted her Starlight Wish to go on a Disney Cruise.
It was a dream come true for Charlotte who loved meeting all her favourite characters, especially the Princesses, Mickey and Minnie.
“We had the most amazing time on Charlotte's wish. Seeing her so full of confidence, laughter and joy was truly magical; it’s something we’ll treasure forever.”
Simone and Daniel are so proud of everything Charlotte achieves despite the challenges she faces.
“Her biggest achievement is simply being herself - the sweetest little girl who loves life and is determined to always gives things her best go.”
Simone said without the positivity that Starlight brings, hospital would be incredibly difficult.
“Starlight brings so much light and joy into an otherwise tough place. Having fun, laughing and playing don't just brighten the moment, they help children feel happy and safe when so much is out of their control. We’re so grateful for everything Starlight does children and families like ours.”
