Rare brain tumour causing Sydney baby Viraaj Nayak 200 gelastic seizures every day

Ten-month-old Viraaj Nayak’s laughs are not a sign of joy – they are gelastic seizures, triggered by a “giant” tumour in the centre of his brain.

It should be the most delightful sound in the world but for one Sydney family, their baby boy’s giggle sparks fear, signalling the start of yet another drug-resistant seizure.

Ten-month-old Viraaj Nayak’s laughs are not a sign of joy – they are gelastic seizures, triggered by a “giant” tumour in the centre of his brain. He can suffer more than 200 of these seizures on any given day, and there’s nothing his doting parents Jyotishree and Priyatam can do to stop them.

Viraaj Nayak, 10-months-old, has a very rare brain tumour known as Hypothalamic Hamartoma.

At just a few-days-old, Jyotishree and Priyatam knew something was wrong with their tiny baby boy. He refused to feed or sleep, had fluctuating sodium levels, and experienced both gelastic seizures, and others that would make him convulse.

“He would become stiff and his neck would be bent for hours, and he would make a fussing sound,” his mum Jyotishree said.

“He was just a newborn – I knew that wasn’t right.”

By two-weeks-old, after several tests and MRIs, Viraaj was diagnosed with the very rare Hypothalamic Hamartoma, a tumour formation on the hypothalamus, the area at the base of the brain that controls the production and release of hormones by the pituitary gland.

The day he was diagnosed in April is etched into the memory of his parents – who are still struggling to comprehend their baby’s illness.

“I just started crying, I was in disbelief,” Jyotishree said.

Viraaj in hospital as a newborn.

“Priyatam too was crying. Never have we heard of a newborn with a brain tumour.”

Jyotishree spends every waking moment with her baby, unable to leave his side, or play outside with their older son, for fears Viraaj may experience a seizure.

“It’s very hard, as a mother, not being able to be with my other son … you feel devastated,” she said.

With the rare tumour sitting right in the middle of the brain, very few surgeons will operate, due to the extreme risks, and the fact that so few children are diagnosed.

Jyotishree and Priyatam have dedicated every spare moment to researching Hypothalamic Hamartoma and doctors who have successfully removed the tumours, knowing that with each seizure, more damage could be done to their little boy’s brain.

The couple finally found a neurosurgeon in the United States who specialises in treating this rare condition, and removing the tumours.

Despite the prospect of three different brain surgeries to remove the tumour, more than $300,000 USD in medical costs, and months in an unfamiliar country – the family have decided to go ahead with the surgery in April, knowing it will give Viraaj the best chance at life.

“My child is suffering, we have already delayed for so long,” Jyotishree said.

“We have hope, we know this is the best thing for him.”

The family have started an online fundraiser to help pay for Viraaj’s surgery – with dozens already contributing more than $80,000.

To donate, visit: https://www.gofundme.com/f/zjd87-help-save-my-babys-life-hh-brain-surgery

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