With his big smile and infectious laugh, four-year-old Rocco lights up any room!
His mum Rachelle says he's so upbeat you'd never know how much he's endured since being diagnosed with Spina Bifida at birth.
"Rocco's never-give-up attitude is amazing. He hasn't developed a mindset of feeling different and never questions why he can't do things. He just tries things his way and if it doesn't work out, he just wings it."
Rocco is full of energy and loves music, sports and horses. He is doted on by his three big brothers Zac, Hayden and Koby. The family call him their keen little jelly bean!
Rocco's condition was discovered at Rachelle's 20-week pregnancy scan and the diagnosis was overwhelming for the family.
Life has been a huge rollercoaster and hasn't been without challenges. With diagnosis comes continuous appointments, endless running around and the simplest things can become chaotic. It's put a lot of pressures on us all, but at the end of the day Rocco has taught us many life lessons and he's an amazing part of our family.Rocco's mum, Rachelle
Rocco has already endured three major surgeries in his short life.
At birth doctors removed the fluid sac on Rocco's spine and at 10 days old, he had two further operations to insert lumber shunts.
The location of Rocco's Spina Bifida causes Hydrocephalus (water on the brain) which requires ventricle shunts to relieve the pressure on his brain.
More recently, he was also diagnosed with Epilepsy and has Arnold Chiari malformation type 2 - a condition where the brain tissue extends into the spinal canal. As he has no sensation or muscle tone from his knees to his toes, Rocco relies on walking aids for mobility.
To manage Rocco's complex health conditions, he has regular stays at the Sydney Children's Hospital at Randwick.
The constant travel from the family's home on the NSW Central Coast to the hospital takes its toll.
"We decided to move to the coast for more affordable living but sadly we now feel split in two. It's a big strain on our family dynamics," says Rachelle who is the full-time carer for Rocco.
One bright light for the family over many years has been Starlight's hospital services.
"Our family first discovered Starlight through a decade ago - with our now 12-year-old son Koby who was diagnosed with leukaemia as a baby. The Starlight Express Room helped distract us then from everything that was going on."
Now Koby's little brother Rocco enjoys that same joy and distraction, thanks to Captain Starlight.
Rocco will visit the Starlight Express Room at every opportunity and Koby enjoys going with him to be part of the experience helping to support his little brother.
Rachelle said Starlight has helped make hospital a more positive experience for Rocco and the whole family.
As a mum, Starlight has given Rachelle a place to sit back and take time out from the stress and anguish of Rocco's treatment.
No matter what kind of day you or your child are having, you know the moment you step into the Starlight Express Room, you're going to smile. The excitement on Rocco's face is priceless.Rocco's mum, Rachelle
Having fun with Captain Starlight helps Rocco feel less anxious about coming to hospital.
"Rocco loves it when Captain Starlight comes to visit him on the wards, especially when he's confined to his room or bed. They always find a way to keep him entertained and he can still participate in activities even when he can't make it to the Starlight Express Room," she says.
Without Starlight, Rocco would have missed out on so many opportunities to laugh and smile when things were really tough. Discovering Starlight has been life-changing for the family and Rachelle is so thankful to Starlight supporters.
None of us want to ever see anyone go through what Rocco has had to go through. Starlight ensures every child gets to enjoy pure happiness in really difficult situations. Their focus on making children happy is amazing. We are so appreciative of everything Starlight has done for our family.Rocco's mum, Rachelle
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