Three-year-old Eliza was so excited when her baby sister Ruby was born. She came into the world peacefully but sadly within 12 hours was vomiting from a bowel blockage.
Within 48 hours Ruby was rushed from her local hospital on the NSW Central Coast to neonatal intensive care at the Children's Hospital at Westmead in Sydney.
Ruby had a bowel blockage and needed urgent surgery.
As the family tried to cope with the unimaginable anguish of their newborn undergoing surgery, they were told that Ruby also had Cystic Fibrosis.
Mum Danielle said the diagnosis left them shell shocked as they adjusted to life as 'a hospital family'.
"Our baby looked so beautiful, yet we were being told by a bunch of strangers that she had a life-limiting disease with no cure. Instead of settling into life back home, we were learning how to administer medication and give physiotherapy."
The family stayed at the children's hospital for three weeks and in that time started to learn what it would mean to care for a child with a serious illness.
Danielle said the whole family was impacted. "Eliza had just turned three and suddenly she's in a strange place with stressed out parents and a new baby sister she rarely got to see."
Managing Ruby's condition is time consuming and as she's got older, she's started to feel 'different' to other kids, especially as she needs medication to help her eat which can force stares from other kids.
Ruby doesn't have the luxury of a sleep-in as she needs to wake up and clear her airways every morning. CF leaves her tired and she often misses out on school and social outings - we have to limit where she can go due to the fear of infection as patients with CF are more prone to lung infections.Ruby's mum, Danielle
While Cystic Fibrosis is part of Ruby's life, she doesn't let the illness define her - it's not her 'whole' life.
Now eight, she's a fun-loving, cheeky kid with a great sense of humour and a deep love of learning. She's infatuated by animals, nature and the universe and cherishes every bit of normality life throws at her. She loves trying new things and is always keen to give any activity a go including yoga, guitar, dancing, and violin. Cheerleading and archery are next on her list to conquer!
But sadly, frequent hospital stays take Ruby away from the things she loves. As Danielle says: "There's no days off from CF - there's no denying our lives would be very different if CF wasn't in the picture."
Ruby visits the Cystic Fibrosis clinic at least once a month in Sydney where she sees a multidisciplinary team and has ongoing rounds of tests. She has at least two hospital admissions per year lasting for weeks each time. Cystic Fibrosis has no cure and is a progressive disease so her time in hospital increases each year.
Thankfully, Ruby has Starlight in hospital helping her enjoy her childhood. When she's well enough, Ruby will visit the Starlight Express Room at any opportunity!
Despite the many painful procedures she has to endure in hospital, Ruby looks forward to going back, so she can have fun in the Starlight Express Room. It gives her a break away from all things medical.
Big sister Eliza also loves the Starlight Express Room and it helps keeps her entertained when she visits Ruby in hospital.
The Starlight Express Room is an escape from hospital. It breaks up the monotony of hospital life by injecting fun, laughter and creativity into days that would otherwise be rough for sick kids.Ruby's mum, Danielle
When Ruby isn't well enough to leave her bed, Captain Starlight will visit her on the ward bringing a smile to her face and both sisters are natural whizzes with the afternoon quiz!
Danielle said that happiness makes a powerful difference, helping Ruby cope with her illness and treatment. "When a child is in a happy mood, they are in a better frame of mind to face the not so fun parts of having a chronic illness. As soon as the Captains leave Ruby on the ward, she's asking when they will return again!"
Captain Starlight has given the family the gift of 'good memories when stuck in a bad place' - it's allowed Ruby and her sister to be distracted when in hospital, without which they probably would get bored.
Starlight is invaluable. Not only for the patient, but for the parents and siblings. Having a sick child affects so much more than the patient. Starlight really does pick up the whole family. When you're in the Starlight Express Room you can see the other parents physically relax because they know their child is having fun in there.Ruby's mum, Danielle
And to Starlight supporters: "A massive, huge thank you! The effect that Starlight has on Ruby goes way deeper than putting a smile on her face, it is giving her the resilience to get through a painful stressful time and the bravery to keep being able to return to the hospital in a strong mental state."
More Starlight Stories
Discover the many ways Starlight and our supporters help light up a sick child’s life