As little Viraaj Nayak flies out to America with his family, there’s trepidation as well as anticipation.
While the one-year-old is oblivious to it all, parents Priyatam and Jyotishree Nayak and his brother Purab, are hoping this will be a trip that will change their lives.
The Hornsby family have been caught in a distressing struggle against a syndrome so obscure that it has left medical professionals grasping for answers. A possible solution comes from New York, America but with a huge medical bill, for which the family have been fundraising lately.
“At just two months old, Viraaj was diagnosed with Hypothalamic Hamartoma (HH), a tumour-like formation in the brain,” Dad Priyatam described to Indian Link. “A rare occurrence, at the base of the hypothalamus which controls the production and release of hormones. In most cases, this manifests as a tiny growth, barely the size of a rice grain, but the mass in Viraaj’s brain is 3 cm, making his situation more critical than others.”
The prevalence of HH varies from 1 per 50, 000 to 1 per 200, 000 individuals, with a slight predominance among boys. With only a couple hundred cases recorded worldwide, this syndrome remains shrouded in mystery.
So far, there have been no cases in Australia that have been cured and the syndrome’s progression threatening to usher in seizures, stunted development, and a multitude of other challenges, this is a race against time for Viraaj.
“We had no idea what to do,” Priyatam revealed. “The doctors said we may just have to live with it, medicating for seizures. We were left feeling abandoned.”
For Viraaj’s family, the journey has been filled with heartache, uncertainty, and a relentless pursuit of answers. With no support groups readily available, they’ve found solace in the solidarity of a handful of families scattered across the country.
“Jyotishree and I got to speak to a family in Brisbane – they are being sent to Canada for treatment, with government support. ”
This was an option unfortunately unavailable to the Nayak family, due to their visa status and the implication of insurance not covered in treatments overseas. Yet, they were happy to see someone with this ailment having hope.
Another happy find was an American child, whose case was quite similar to Viraaj Nayak’s but the mass had been successfully removed. Seeing their child, who has not had any seizures since their surgery, Priyatam and Jyotishree found hope in NYC-based neurosurgeon, Dr David Langer. Internationally recognised as a leading neurosurgeon and expert in cerebral restoration and aneurysms, he brings more than 22 years of experience to his highly personalised and direct patient care practice.
Yet, hope comes at a steep price.
Medical expenses are going to be a staggering $263,000 USD ($400,000 AUD). This should cover three surgeries – one to remove the growth, a second to prevent seizures, and a potential third for post-op complications.
With no insurance, governmental or financial support, the Nayaks have scraped together 160K themselves, and then looked to the community for support. 150K has been raised so far, with 240K yet to be raised.
Amidst this turmoil, the collateral damage inflicted upon Viraaj’s older sibling – a seven-year-old grappling with a sea of emotions and a newfound sense of isolation – is hard to ignore. His family in hospital for extended periods, his carer grandparents noticed significant behavioural change. The much-needed focus on Viraaj’s medical journey leaves little room for his sibling’s needs, underscoring the profound impact of such illnesses on family dynamics.
As they brace themselves for the scheduled surgery on 22 April, Viraaj’s family stands resolute, guided by the belief that amidst the chaos, there exists the hopeful promise of a brighter tomorrow.
For them, this isn’t just a battle against a rare syndrome; it’s a testament to the resilience of the human spirit in the face of challenging odds.
Help Viraaj Nayak get better: donate to his GoFundMe appeal here
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