A toddler was born with a rare tumour which causes over 250 seizures a day.
Little Viraaj Nayak was diagnosed with hypothalamic hamartoma a very rare non cancerous tumour on the area of the brain that controls the production and release of hormones at just two weeks old. Parents Jyotishree Mishra, 36, and Priyatam Nayak, 37, struggled to get their newborn to sleep or feed and were horrified when he had a seizure at just five days old.
Following a CT scan and further tests, doctors found the tumour but the parents have struggled to find neurosurgeons willing to operate. Viraaj suffers with over 250 drug resistant seizures a day - which can sometimes last up to 14 hours each - and has a sodium imbalance.
Viraaj Nayak with mum Jyotishree Mishra, dad Priyatam Nayak and his brother (Priyatam Nayak/SWNS)The parents searched the world for a surgeon who would operate on Viraaj and have flown to New York, US to pay $460,000 AUD for open skull surgeries to hopefully successfully remove all the tumour. Priyatam, a software engineer, from Sydney, Australia said: "The seizures have increased. The seizures are constantly happening. He's a fighter. He wants to live."
Viraaj was born on March 27, 2023 but his parents quickly realised something wasn't right. Jyotishree, a mum-of-two, said on GoFundMe: "He exhibited distress, refused to feed or sleep, and experienced alarming symptoms such as severe seizures and fluctuating sodium levels. His tiny body became stiff and his neck would be bent to one side for hours and he was making fussing sound."
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Viraaj Nayak was diagnosed with hypothalamic hamartoma in April 2023 and the family have been fighting to get him the right treatment ever since. Dad Priyatam says his son's seizures continued to get worse and he struggled to sleep.
Viraaj being treated in hospital (Priyatam Nayak/SWNS)Priyatam said: "Sometimes for 18 or 19 hours he couldn't sleep. You can't do anything." Because of the position of the 3cm tumour doctors across the world have refused to operate. The parents were able to find a surgeon who removes Hypothalamic Hamartoma tumours in the US.
They flew to Cohen Children's Medical Centre in Queens, New York In April 2024 for a series of open skull operations to remove the tumour in stages. Viraaj's first surgery on April 22, 2024 and second surgery on April 27, 2024 removed 80 per cent of the tumour. But Viraagj had to have an emergency surgery on June 1, 2024 to treat hydrocephalus - a fluid build up on the brain.
Viraaj Nayak in hospital (Priyatam Nayak/SWNS)He still needs an endoscopy to remove the final part of his tumour. The family are raising $460,000 AUD to cover the costs of Viraaj's treatment. They hope the surgeries will give him back a quality of life. If they fail to remove all of the tumour it may cause further symptoms such as early puberty.
Jyotishree wrote on GoFundMe: "Witnessing our little one in pain, feeling helpless to provide relief, has shattered our world and left us grappling for hope. Despite the bleak prognosis, we refuse to give up on Viraaj." Priyatam said: "We don't know what his life is going to look like."
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