The child has 250 seizures a day due to the very rare condition

A toddler suffers more than 250 seizures a day after being born with a rare tumour. Viraaj Nayak was diagnosed with hypothalamic hamartoma – a very rare non-cancerous tumor in 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. After a CT scan and further tests, doctors discovered the tumor, but the parents struggled to find neurosurgeons willing to operate.

Viraaj suffers from more than 250 drug-resistant seizures a day — which can sometimes last up to 14 hours each — and has a sodium imbalance. The parents searched the world for a surgeon to operate on Viraaj and flew to New York, USA to pay £240,000 for open skull surgery to successfully remove all the tumour.

Priyatam, a software engineer, said: “The seizures have increased. Seizures are happening constantly. He is a fighter. He wants to live.”

Viraaj was born on March 27, 2023, but his parents quickly realized something was wrong. Jyotishree, a mother of two, said on GoFundMe: “He was in distress, refusing to feed or sleep and experiencing alarming symptoms such as severe seizures and fluctuating sodium levels.

“His little body stiffened and his neck was bent to one side for hours and he was making a restless noise.”

Viraaj Nayak was diagnosed with hypothalamic hamartoma in April 2023, and since then the family has been struggling to provide him with the right treatment. Father Priyatam says his son’s seizures continued to worsen and he struggled to sleep.

Priyatam said: “Sometimes for 18 or 19 hours he could not sleep. There is nothing you can do.”

Because of the position of the 3 cm tumor, doctors around the world refused to operate. The parents were able to find a surgeon who removes hypothalamic haematoma tumors in the US.

They flew to Cohen Children’s Medical Center in Queens, New York in April 2024 for a series of open skull surgeries to remove the tumor in stages. Viraaj’s first surgery on April 22, 2024 and second surgery on April 27, 2024 removed 80% of the tumor.

But Viraagj had to have emergency surgery on June 1, 2024 to treat hydrocephalus – a build-up of fluid on the brain. He still needs an endoscopy to remove the final part of his tumor.

The family is raising money to cover the costs of Viraaj’s treatment. They hope the surgeries will give him back some quality of life. If they fail to remove all of the tumor, it can cause additional symptoms, such as precocious puberty.

Jyotishree wrote on GoFundMe: “Witnessing our little one in pain, we felt powerless to offer comfort, shattered our world and left us fighting for hope. “Despite the bleak forecast, we refuse to give up on Viraaj.”

Priyatam said, “We don’t know what his life will look like.”

Donate here – https://www.gofundme.com/f/help-baby-life-hh-brain-surgery