If you got chatting to eight-year-old Sophia, she’d happily tell you all about her day and her latest fairy craft creations. Her mum Emily says she’s an outgoing, bubbly girl with a wonderful imagination who loves playing mermaids and unicorns with her big sister Isla.
Sadly, late last year, Sophia’s carefree world of fun and play was suddenly overtaken by the overwhelming pain and isolation of hospital.
What started as a simple headache, quickly spiralled into unimaginable anguish for the family.
As Emily and dad Daniel saw Sophia become increasingly unwell over a matter of days, they took her to the doctors who prescribed antibiotics and anti-nausea medication.
Sadly, her condition didn’t improve with worsening headaches, vomiting and fatigue.
“She just didn't get any better, she was so miserable and wasn't getting any relief from the pain, so we took her to the children’s hospital. I kept thinking it’s probably just a virus and they’ll send us home,” Emily recalls.
Sophia had countless tests and procedures including a double bone marrow biopsy and a lumbar puncture as doctors tried to determine her diagnosis.
The uncertainty was overwhelming. “We were bracing ourselves for a possible cancer diagnosis,” Emily said. “We felt so helpless, with every answer came yet more questions.”
Doctors ultimately discovered a massive staph infection in Sophia’s brain, causing an inter-cranial abscess, Osteomyelitis (infection of the bone) in her skull, blood clots and meningitis.
“We were devastated, it was such an emotional time. You suddenly realise how precarious your happiness is; your entire life can get thrown upside down in an instant. When cancer was ruled out, we were incredibly relieved, but then were faced with the uncertainty of what next for our little girl,” Emily said.
After an initial inpatient stay of 3 weeks, Sophia was in and out of hospital for months having surgery, blood tests, cannulas and general anaesthetics, and was treated with IV for antibiotics for eight weeks to fight the infection.
“It was horrendous seeing her in so much pain and so sick. All the procedures and everything she had to go through, it's more than many adults will probably ever have to deal with in their entire life and she’s just a child,” her dad said.
Hospital took Sophia away from so much of her old life. She missed being at home with her sister, she missed her friends, her own bed and missed her beloved golden retrievers.
“Every needle, every dressing change, every invasive procedure, every test was so difficult for Sophia. As a mum you just wish you could offer yourself up instead. She’s had to be so brave over and over,” Emily said.
Amid so much heartache and sadness, Starlight was there helping to bring moments of joy and happiness.
When Sophia was confined to her hospital room, Captain Starlight brought fun and games to the ward helping to distract her from everything she was going through.
Once she was feeling well enough, Sophia’s first trip out of the ward was to visit the Starlight Express Room! She was excited to introduce the Captains Starlights to her Starlight teddy, Amy the Koala!
When Sophia’s sister Isla visited her in hospital, the sisters loved doing craft and playing together in the Starlight Express Room.
Emily said when hospital felt so bleak, the happiness from Captain Starlight transformed the girls’ days.
“The joy and relief from the drudgery of hospital life cannot be understated. It was also wonderful for Isla too - she could go to the Starlight Express Room and play which was good because she didn’t cope very well in the hospital environment as she found it difficult and confronting.”
Sophia loved the Starlight Express Room so much her mum laughs that they were often first there as the room opened! She particularly loved doing arts and crafts, painting and drawing and chatting to the Captains.
“She lived for Starlight,” Emily said.
Often Starlight was the incentive they needed to help ease Sophia’s fears of a blood test or painful procedure. Knowing she had the Starlight Express Room, gave Sophia something fun and positive to look forward to.
Starlight kept up a sense of ‘normality’ in the family’s life and helped give Emily and Daniel a chance to take a break and recharge their batteries.
“There is only so much that you can offer as a parent when you're pouring from an empty cup. It's a horrific experience that I wouldn't wish on anyone and to have that release as a parent to just sit down and know your child can go off and happily play, it’s such a relief.”
Importantly, Emily said the happiness and positivity helped build Sophia’s resilience and her ability to cope with the stress and pain of hospital and treatment.
“What Starlight does is essential work - it's essential to health and wellbeing. Without it we would have been in a very dark place. Until you actually experience that, you can't fathom how needed services like Starlight are. We’re so grateful for the support we’ve had from Starlight, from the bottom of our hearts, thank you.”
