Aussie family forced to make 16,000 km trip in desperate bid to save one-year-old boy

The heart-stricken Sydney family of a toddler with one of the rarest brain tumours in the world has made a desperate plea for support ahead of the family's trip to the US for lifesaving surgery.

A “giant” Hypothalamic Hamartoma was discovered in Viraaj Nayak's brain two weeks after he was born. One year on, that tumour is now almost three centimetres in size and responsible for causing hundreds of drug-resistant seizures every day.

His father Piryatam Nayak told Yahoo News Australia the one-year-old is often unable to sleep because of the frequent seizures.

“Maybe 200, maybe 400 some days, they’ve increased day by day,” the Hornsby father-of-two said. “Yesterday, he was not able to sleep at all, because no medicine in this world can control these seizures.”

The family are planning to fly to the United States next week for three operations — coming in at an estimated total cost of $400,000 — which are the last chance to save Viraaj.

“If you can donate to our GoFundMe page, even $1, that is enough,” Priyatam Nayak said. “And give prayers for our kid, because prayers are needed. Money we can arrange, but prayers are needed.”

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‘A glimmer of hope’

Holding a “glimmer of hope” and refusing to give up on their baby boy, his parents — Priyatam and Jyoti — scoured the globe for help to treat their son’s rare condition.

The type of tumour Viraaj has is usually present at birth and is found in only one in 10 million people.

“We searched all over Australia, Japan, Singapore, the UK and India,” explained Nayak, “but many neurosurgeons said: ‘we cannot remove the tumour completely, we can only remove 70 per cent’.”

Beyond the challenge of the tumour’s vast size and impossible location in the hypothalamic area, which regulates hormonal output, the risks are huge, but leaving any of the tumour behind could lead to the recurrence of seizures and other conditions.

But there is one neurosurgeon in the US, a specialist in treating this rare condition, who is willing to take the risk.

‘More money is needed’

In a number of days, the Nayak family will fly to New York for a series of difficult “open skull” operations at the Cohen Children’s Medical Centre in Queens, which will hopefully allow for the complete removal of the tumour.

“They will do the first surgery, which will last eight hours, and are hoping to remove 70 to 80 per cent of it,” the father said. “Seven days later, they will do the second operation and are hoping to remove 15 per cent of the tumour. The third surgery, two weeks later, will hopefully remove the final five per cent.”

He added that surgeons will tackle the Hypothalamic Hamartoma from three sides of the one-year-old’s head, with the third one being an endoscopy through Viraaj’s nose.

The bill for the three critical surgeries and rehabilitation — which could take anywhere from weeks to months and comes in at $1,500 to $4,500 a day — an estimated total of $400,000. But it could be higher.

With both of Viraaj’s parents on work visas and without permanent residency, there is no government assistance they can apply for.

“As a modest family unable to shoulder this immense financial burden alone”, Viraaj’s mother said she set up a GoFundMe page. “We humbly turn to your kindness and generosity,” she wrote online: “pleading for your assistance in raising the funds essential to provide Viraaj with the lifesaving treatment he urgently requires.

"Even though he is dealing with these health issues, he is a happy child," Jyoti Nayak wrote. "His bright and innocent smile makes us happy and gives us courage.

"Your contribution, no matter how small, can make a world of difference in Viraaj's journey towards recovery. With your support, we can bring him closer to the promise of a brighter, healthier tomorrow."

So far, more than $144,000 has been raised on the family’s GoFundMe account, but with just days to go until the family depart for the US, time is running out.

“We have around $150,000 to $200,000 because we have taken out a loan,” Nayak said. “But we need a further minimum of $100,000 to $250,000 so more money is needed.

“And apart from the money, prayers are the most important thing.”

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