‘Can’t believe he’s still alive’: Boy’s terrifying condition shocks doctors

Little Bertie’s mum has an agonising wait each time her four-year-old goes for a brain scan but she now knows to pack a bag.

Rusha Harper-Ceylani will have a bag packed this month, just like she does every three months.

She knows better than not be prepared by now, because her son Bertie has been rushed for brain surgery 10 times already in his short life.

Little “Dirty Bertie” – as he’s affectionately known because of his love mud and sand – develops cysts in his brain.

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Bertie Ceylani has a MRI every three months to see if his cysts have returned or grown.

Frighteningly, they show no symptoms or warnings signs, so when it comes time for a MRI and doctors see them, the Darwin mother and son can be on the next flight to Melbourne for emergency surgery.

“He’s had so many cysts grow, I’ve lost track of measurements,” Rusha said.

“His cysts get so big, they can’t believe he’s still alive.”

Bertie Ceylani, 4, was born with a rare arachnoid cyst in his brain but doctors initially thought it was OK because it had not grown.

Rusha’s grandma had died in the UK two days before Bertie was born, so the single mum made plans to take her new baby over there.

“I’ll never forget the neurosurgeon said to me, ‘I’m sure it’s stable, you’ll be able to go,’” Rusha said.

“He went in the machine and the lovely trainee doctor gasped. The next morning we were flying to the Melbourne Royal Children’s Hospital.

“They couldn’t believe he was still standing.”

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Rusha Harper-Ceylani knows each time they might be sent for surgery straight away.

Bertie has had to fly to Melbourne multiple times.

But the four-year-old continues to show no symptoms.

Rusha said doctors could not explain why Bertie’s condition was so unique.

One of the times he was rushed to surgery he was happily playing in a wave pool the day before.

“There’s no rhyme or reason,” she said.

“Children (with this condition) are supposed to be sick. This child, as a baby and to this day, he shows no symptoms. No one believes you when you take him to hospital, then he’s rushed to Melbourne.”

Bertie has had three shunts put in to drain the fluid in his brain and now has a permanent, programmable one.

“They’ve tried so many times to stabilise,” Rusha said.

“His surgeons says he’s literally one of the most complex cases.

“I pack a bag and hope we’re not going to Melbourne each time.”

Rusha said she was hopeful Bertie’s condition would medically stop around the age of 10.

In the meantime, she is busy keeping up with her bubbly boy who now “has a bit of a sprint going on” after not being able to walk.

To give back, she has signed Bertie up as an ambassador for Starlight Day on May 7, which aims to raise $650,000 to bring happiness to thousands of sick kids.

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The Starlight Children’s Foundation makes Bertie’s hospital visits better.

Bertie has become an ambassador for Starlight Day next month.

With all his hospital visits in both Melbourne and Darwin, he’s spent a lot of time in the Starlight Express Room.

“When you’re stuck in hospital with an overactive boy, just to go and escape is second to none,” Rusha said.

“Plus, as a parent you’re mentally and emotionally drained so it’s nice for someone to entertain your child. Nothing is too much trouble.

“I get a five minute breather. When we were in Darwin he couldn’t even walk and he was in the Starlight room trying to dance.”

Rusha wants to give back to the foundation that’s helped them.

Bertie now has a programmable shunt in his brain.

Rusha said the COVID-19 pandemic had hit organisations like Starlight hard.

“We spent a month in Melbourne and couldn’t go,” she said.

“When people are fundraising and stuff, they need to understand, things have changed, Starlight have had to be more inventive and it costs money.

“I think people underestimate the work Starlight does which is second to none.”

To donate visit the Starlight Day page.