At just four, smiley little Eve’s medical journey has been long and complex.
“It all started with a case of hand, foot and mouth which Eve contracted when she was three,” her mum Amanda explains.
Eve had an extremely severe case of enterovirus which had caused meningitis. She was suddenly vomiting and had spots all over her body. She was admitted to hospital for nearly a week and was treated with fluids before being sent home with antibiotics.
Sadly, Eve’s condition spiralled downhill quickly.
“I had to call an ambulance at home because she couldn’t get off the couch, her legs wouldn’t move - it was almost like she was paralysed,” Amanda said.
Eve was admitted to hospital again and diagnosed with a secondary infection. She endured lingering illnesses meaning even more time in hospital.
Over the coming months Eve had regular checks-ups as an outpatient to monitor her condition.
“I was worried that Eve still wasn’t herself,” Amanda recalls. “But I was told that hand foot and mouth can take up to a year before Eve might feel better given how severe her case had been.”
However, Eve’s health continued to decline, and Amanda knew in her heart something was not right. Eve was falling asleep anywhere – in the house, in the car, at the dining table -and she was constantly falling over like her legs weren’t functioning properly.
Increasing concerned, Amanda and Nathan took Eve to see numerous GPs to try and get some answers. Each time, Eve’s symptoms were deemed to be the long-term effects of her initial severe case of hand, foot and mouth.
“We weren’t going to give up- it’s every parent’s gut instinct – we desperately wanted answers as to what was going on with Eve.”
Eventually after an agonising 11 months to-ing and fro-ing, a specialist referred Eve for an MRI concerned by how long her symptoms had persisted.
Tragically, the MRI revealed Eve’s meningitis had turned into hydrocephalus condition where the brain retains spinal fluid due to the extent of the meningitis being there for some time. Her brain was infected and her ventricles were far larger than normal for a child of her age. The scan also showed a benign brain tumour on Eve’s pineal gland.
“It was a shock, gut-wrenching and heartbreaking to find out she was so unwell after fighting for her for so long,” Amanda said. “But in some ways it was a relief to finally have some answers.”
It was a harrowing further six months while doctors monitored Eve’s condition. It was heartbreaking for Amanda and Nathan seeing Eve so sick. She suffered from hallucinations, her vision was impaired, and she appeared to be having absent seizures.
She endured lumbar punctures and had to have further to MRIs to check if the ventricles in her brain were reducing in size. Sadly, they were not and she needed urgent ventricular surgery on her brain.
Eve’s condition has impacted the whole family, her parents had to take time off work and even find short-term accommodation for her frequent hospital procedures and brain surgery. It has been hard on Eve’s big sister Sara, age seven. The two are really close and such good friends Amanda smiles that the sisters have started to call each other their ‘BFF’s .
The family live over an hour away from the hospital and Sara has had to take numerous days off school to go to the hospital with her parents or attend after-school care programs as they would not be back in time to accommodate school pick up and drop off times. Amanda has also had to step away from work to juggle all the medical appointments.
Spending so much time in hospital means Eve has missed out on lots of social interactions. Amanda said she didn’t really have friends for a long time, couldn’t have play dates, and could no longer attend childcare.
Thankfully the family has the Starlight Express Room to visit every time they are in hospital. It’s a place where the girls can socialise, play and have fun.
“Starlight has been amazing, not just for Eve, but also for her sister Sara. The Starlight Express Room has been a safe place for them to go and enjoy the things that they love to do together,” Amanda said.
Eve first discovered Captain Starlight watching Starlight TV in her hospital bed and was really excited to meet them in the Starlight Express Room!
“The Starlight Express Room is beneficial for us as parents too. If we've had an appointment and feel a bit overwhelmed, we know we can go in there and just switch off. The children go and play and you feel like you’re in a different world.” Amanda said.
Due to Eve’s condition, hospital is a constant in the family’s life. Eve’s brain tumour needs ongoing monitoring in case it becomes cancerous and it can also cause issues at puberty. Hydrocephalus is a life-long condition that affects cognition.
Eve has had to deal with a lot of sensory overload and sees an Occupational Therapist (OT). She enjoys sensory toys, water play and doing hand painting.
“Eve can get very emotional and upset over small things- like physically if she can’t turn a page in her book by herself. She has these moments where she won't admit that she's in pain, but we know that she's got pain because of how she’s holding her head. She’s just coping with a lot for a four-year-old,” her mum said.
Eve has good days, tough days and days when she struggles with unbearable pain and fatigue. No matter what kind of day she’s having, the Captain Starlights are always there with the fun and happiness Eve needs.
“Every time we have a hospital appointment or admission Eve knows she can go to the Starlight Express Room, which feels like being in another world with her ‘friends’ from space Captain Starlight. If she needs cheering up she knows she can go there and her sister Sara can go too- it’s so nice to have a place where they feel included.”
Despite all she has to deal with, Eve is a funny, smart and gentle child. She even tried little athletics and proudly came first in the toddler race! She adores her two German Shepherd dogs and would love to be a vet when she grows up.
Amanda said they don’t know what they would have done without the Starlight Express Room and Captain Starlight in hospital.
“Coming from an early childhood background, Starlight provides programs that all sick children need to access. When you go to hospital, it’s so important to have a place that can put a smile on little ones' faces and create a positive distraction. The Starlight team really make sure the children have a great time with interactions, art and crafts and imaginative play. It’s such a beneficial charity.”
