Meet one cheeky, Lego loving kid.
Meet Cam! His mum describes him as loving, cheeky and mischievous. He's known for his sense of humour, wry smile and wicked laugh! Family means everything to Cam and he loves being with his older sister Hannah and spending time with his cousins.
Two years ago, he was the 6th child in the world to be diagnosed with the rare movement disorder known as GNAO 1 Mutation. Cam's mum Nicole said the diagnosis finally gave a name to an illness her 12 year-old son has endured his whole life.
Cam is non-verbal, but he understands every conversation and is very intuitive. “He and Hannah have an amazing bond. They don't need to speak to understand each other,” Nicole said.
While Cam uses a wheelchair and is fully reliant on others, he is a brave and resilient kid. When not catching up on the latest episode of Bondi Rescue, Cam will be building Lego, playing with his dog Bella or racing in his power chair.
Cam was diagnosed with Cerebral palsy when he was eight months old, but it soon became clear that it was something more than that.
When he was eight, Cam had his first major series of episodes highlighting his disorder. He experienced uncontrollable movements, which became so severe he was rushed to intensive care.
“It was a very scary time, seeing all the doctors and nurses rushing around, your child turning blue, all the machines, needles, drugs and respirators, and there's nothing you can do,” Nicole said. “I remember thinking how much can he endure?”
It was a further four years of uncertainty before they received a formal diagnosis.
Nicole said the diagnosis did bring some good news; that the condition is neither degenerative nor something that might be potentially passed on. It also gave the family the chance to connect with others to share their experiences.
Life has been tough for the family since the diagnosis. Cam's hospital admissions are so regular his family affectionately call him a hospital ‘frequent flyer.’
“We have good days, bad days and days we don't want to talk about. It can be very limiting as we can't travel far from the hospital and I've given up work to care for Cam,” Nicole said.
But she said one positive has been the impact Starlight has had on their lives. When he's in hospital, Starlight helps brings out Cam's cheeky little smile.
With each admission, we see it's harder for him to smile, but when Captain Starlight visits, his little smirk appears and as a mum, that means the world to me.Cameron's mum, Nicole
Cam's siblings have been regular visitors to the Starlight Express Room over the years too. “It's a fun place where we can go and have fun together away from the confines of the hospital room and the beeps of all the machines. It's where we get to be together as a family,” Nicole said.
Captain Starlight has been a positive light for the family against a sometimes dark and negative place. Nicole said Captain Starlights have a unique ability to see beyond the child's illness, to see the kid that is often forgotten when dealing with a serious illness.
“The doctors see the disease, the parents see their sick child, but Captain Starlight simply sees the child.”
While hospital remains a constant in their lives, thanks to supporters, so will Starlight. And Nicole said the difference that makes is immeasurable. “Starlight helps kids escape the reality of what they are going through even if it's just for a minute.”
And she is looking to the future with optimism. “Since the diagnosis, we now live in hope that we can get more answers that will help us with Cam's disorder,” she said. For now, it's one day at a time.
More Starlight Stories
Discover the many ways Starlight and our supporters help light up a sick child’s life