Isla

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Isla with Captain StarlightThere's something very magical about Isla's room in hospital. She says it's the magic fairy dust that Captain Starlight sprinkles when they visit her ward! Those visits mean the world to Isla and bring her so much joy during her long stays in hospital.

When she was just four years old, Isla was diagnosed with Autoimmune Autonomic Neuropathy - a rare condition which affects the nervous system.

She'd had gradual symptoms which initially affected her bladder and bowel, then things got progressively worse. Her mum Natalie said it was a scary time seeing Isla so unwell.

"Everything felt uncertain and out of our control at that time. A diagnosis at least gave us an answer to so many questions," she said.

What followed was an agonising four-month stay at the Children's Hospital at Westmead.

Natalie said every aspect of life changed, and it became nearly impossible to plan ahead. Isla uses a wheelchair for any long distances, and is fed through a naso-jejunal tube.

Isla in hospital bed

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Life became a juggle trying to find a balance between work, school, hospital admissions, home life and a sense of normality for us as a family. We have come to appreciate the simple things in life.
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Isla's mum, Natalie
Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.  > Make a Donation

 

Isla loves singing and playing the piano. She's very close to her older sister Imogen, and the girls share a love of music and gelato!

 

Luckily, when Isla's in hospital, there's the Starlight Express Room where she can keep up her love of all things musical and get to be a kid again.

 

Isla and Captain Starlight playing music

 

Isla loves to make music videos with Captain Starlight and doing arts and crafts in the Starlight Express Room. She even learnt to play the Ukulele in hospital - now that's pretty magical!

 

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Starlight does truly amazing work! I would say to any family who spend time in hospital with a sick or injured child and adolescent, to go and visit the Starlight Express Room. It will change your hospital experience.
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Isla's mum, Natalie

Isla's mum said Captain Starlight makes hospital a less scary place for them to spend time. "Isla looks forward to going to hospital so she can visit the Starlight Express Room, and tries to guess which Captains are arriving from Planet Starlight that day."

Isla with Captain Starlight

Starlight has given the whole family an escape from the reality of Isla's treatment, and helped create special moments for them to share during the most difficult times.

Natalie said: "Hospital was not where we'd planned to spend Christmas, but our whole extended family was welcomed into the Starlight Express Room for hours of fun and laughter." And Imogen recalls the fun that Captain Starlight brought on Christmas Eve with Santa-themed nail painting!

Isla and her family in the Starlight Express Room at Christmas

It's hard for Natalie and dad Derek to imagine their journey without the positive impact of Starlight on their lives. When Isla was at her most unwell, there were days when the only time she smiled was when she had a visit from Captain Starlight.

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I was aware of Starlight before Isla got sick, but I had no idea of the impact they have on the lives of sick children and their families. I honestly don't know what we would have done without the daily relief of all things Starlight.
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Isla's mum, Natalie

And to Starlight supporters she said: "You make a huge difference every single day to sick children and their families all around Australia. Do not underestimate your contribution - you help make sick children smile and I can't think of anything more precious than that."

Isla with family

Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.  > Make a Donation
Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.
> Make a Donation

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