Depending on the day, you might find four-year-old Florence pretending to be a princess, a police officer, a superhero or a zombie, or playing mum to her baby dolls. She loves imaginative play and is caring, kind and clever with a big imagination!
“Florence is chatty, funny and loves saying hi to everyone - she lights up the room with her happy personality,” her mum Amanda said.
Describing her bubbly daughter as an “absolute super star” you’d never know the pain and trauma she has faced in her short life.
Florence was just two years old when her mum first noticed she seemed unstable walking and wobbly on her feet.
“We were concerned and couldn’t figure out what was happening, so we kept taking her back to the GP,” Amanda said.
The family ended up at the emergency department and within a matter of days their lives were shattered
Florence had a brain tumour.
The tumour was blocking the fluid flowing through her brain and spine, which was causing the neurological problems.
The tumour was not able to be fully removed, so Florence underwent urgent surgery to try to reduce the size of the tumour as much as possible.
A biopsy revealed the tumour to be a Pilomyxoid Astrocytoma which led to further testing which showed Florence has a genetic disorder called Neurofibromatosis type 1 (NF1).
This was the start of Florence’s life-long journey with NF1, which has come with complications and constant anguish for the family.
“Our family was devastated,” Amanda said. “Suddenly we’re in hospital and our little boy Spencer who was five years old and Autistic and non-verbal was left to be cared for with our extended family. Life was very different from what we expected.”
During her surgery Florence suffered a bleed on the brain which left her unable to move the left side of her body.
She spent her 3rd birthday in ICU.
Florence’s recovery path was slow and painful. She had to learn to eat, talk, move her left arm, and walk again.
At the same time, Florence was also having gruelling rounds of chemotherapy to try and further reduce the size of the tumour. The side effects of all her treatments were unrelenting and left Florence extremely sick.
Amid so much heartache, Amdanda said Starlight brought moments of happiness helping them cope with the pain and loneliness of hospital life with visits from Captain Starlight and visits to the Starlight Express Room.
“When we first visited the Starlight Express Room and Florence was very unwell, the Captain Starlights were still able to make her laugh and smile. Their positive energy really made a difference.”
When Florence was unable to leave her hospital room, her face lit up when the Captains came to the ward and made her laugh with their “fun and crazy antics.”
Florence’s diagnosis and months on end in hospital have impacted every aspect of family life.
Mum Amanda has had to step back from work while husband Chris tries to balance the demands of the family business with medical appointments and unexpected hospital visits.
Amanda said, “I’m a mum and now also a carer. But with the support from our beautiful family, we’re surviving as best we can.”
One of the hardest parts for Florence has been missing out on socialising with other children after almost a year in hospital. She’s also had to cope with the painful side effects of treatment plus the reaction of other kids when they see her loss of hair and looking so unwell.
“She’s a clever, social and positive little girl but hospital and treatment have taken its toll on her social skills with children her own age. We do everything we can to help her learn those skills.”
The Starlight Express Room has helped give Florence opportunities to play and meet other kids while she’s been in hospital. Painting, slime, quizzes and pretend play are her favourite things to do, and she loves proudly showing her paintings to the Captain Starlights.
After six weeks of agonising chemo treatment, doctors started Florence on a new treatment that could be administered through an NG tube at home with minimal side effects.
Pleasingly, over the following nine months, MRI scans showed the tumour reducing and Florence is very close to a full recovery from her brain injury.
“Nothing is guaranteed, and we know Florence will need to be monitored her whole life. Both the brain tumour and NF1 can cause a range of symptoms including tumours in her nervous system, bone deformities and growth problems. But we’re hopeful we’ve been through the worst of it.” Amanda said.
Florence’s treatment is ongoing and the family’s weeks are filled with therapies and ongoing doctor’s appointments and hospital visits.
Knowing she has the fun of the Starlight Express Room and Captain Starlight helps make every hospital visit easier and gives Florence something positive to look forward to.
“I don’t think we would be able to get Florence through the hospital doors after all the pain she’s been through without Starlight there to make her days in hospital brighter. I am so grateful for the amazing positive impact it has on Florence and our family.”
Florence has started back at preschool and has proudly been learning to balance by standing on one leg like a flamingo and has also started writing her name.
Amanda said her daughter is now the best she’s ever been and loves to dress up as Captain Starlight and fly around the house!
She said they can’t imagine hospital without Starlight. “It’s essential for the Starlight Express Room and the Captains to be there for kids in hospital. The fun and laughter my daughter has had after extreme illness is worth a million dollars. Thank you so much!”
