Help Rare Hypothalamic Hamartoma Brain Tumor Surgery in USA

Hello Everyone,

My name is Jyoti, and today I come to you with a plea from the depths of a mother's heart. I'm reaching out to ask for your support in a battle that my precious 11-month-old son, Viraaj, is bravely fighting against a rare and formidable foe – Hypothalamic Hamartoma.

Viraaj came into this world on March 27, 2023, bringing immense joy and hope into our lives. However, our happiness soon turned to concern as we noticed something wasn't quite right. 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.

Our worst fears were confirmed when, at just 2 weeks old, after several tests and MRIs, Viraaj was diagnosed with a giant Hypothalamic Hamartoma, a rare Brain Tumour on the hypothalamus, the area at the base of the brain that controls the production and release of hormones by the pituitary gland. This tumour is usually present at birth, a defect in fetal development , affects only one in every ten million individuals.

The day he was diagnosed in April is etched into our memory, We were in disbelief. Never have we heard of a newborn with brain tumour. We were questioning ourselves and doctors: "did we hear it correctly?", "probably the diagnosis is wrong", "even if its a tumour it can never be that large, his brain is so tiny"... Many questions.. For months we could not accept this, We started blaming ourselves every moment, Our world just collapsed..

Since then, every day is a struggle for Viraaj as he battles 200+ drug-resistant seizures, slipping into status epilepticus once in every week, a state of prolonged seizure activity (non stop gelastic and dacrystic seizures for 12-14 hours). A newborn who was supposed to sleep for most of the day, was unable to nap even for a second until 12-24 hours sometimes. Continuous convulsions. With nonstop involuntary body moments he used to get bruises in his arms, thighs, feets and we were unable to help. We were helpless and felt completely unfortunate. We could not offer anything to calm him down for a second. His little eyes would be extremely sleepy and body will be extremely tired but he couldn't relax a bit..

Note: There is no medicine developed in the world until now to treat the seizures caused by Hypothalamic Hamartoma.

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. Many neurosurgeons told us to accept it and asked to learn to live with this tumour.

Medical experts worldwide(including Australia,INDIA,Singapore) have conveyed to us the challenges associated with this rare condition. Due to the intricate nature of the tumor located in the hypothalamic area, which regulates hormonal output, the risks are considerable, especially given our child's young age and tumour size(3cm). The consensus is that complete tumor removal poses significant risks, and there's a possibility that leaving any portion of it behind could lead to the recurrence of seizures and other complications.

Furthermore, the tumor size, approximately 3cm, presents additional challenges, making the task seem nearly impossible. To their knowledge, there have been no successful cases of complete removal worldwide. This underscores the complexity and urgency of Viraaj's situation

As this is a very rare brain tumour and the surgery is extremely risky, we got know from Australia surgeon there are may be few skilled doctors in USA who are doing HH removal surgery for giant HHs.

Through extensive research and unwavering faith, we've found a glimmer of hope in a skilled Neurosurgeon in the US who specializes in treating this rare condition.

He is the sole practitioner (As far as we Know from our research) to have successfully removed this HH tumor.

His contact details were obtained from a Facebook group dedicated to Hypothalamic Hamartoma, where another patient's mother graciously shared his information.

With his expertise and the promise of specialized care, we believe Viraaj can have a chance at a healthier life.

Yet, this glimmer of hope comes with a hefty price tag, ranging from approximately $264K to $300K USD - a sum required for a series of complex open-skull surgeries and specialized care across 2-3 stages surgeries in the USA. Our Australian Bupa insurance doesn't cover any costs outside Australia and as we are here on work visa, we are not getting any support from the Government as well. As a modest family, we find ourselves unable to shoulder this immense financial burden alone. We humbly turn to your kindness and generosity, pleading for your assistance in raising the funds essential to provide Viraaj with the life-saving treatment he urgently requires.

Please find the estimated surgery costs in USD in the attached screenshot

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.

The funds raised will be utilized to cover three critical life-saving surgeries for Viraaj in the USA.

Thank you for taking the time to read Viraaj's story and for considering a donation. Your generosity means more to us than words can express.

With deepest gratitude,

Jyotishree Mishra (Viraaj's Mother)

Priyatam Nayak (Viraaj's Father)

You can also donate to the below account:

Australia:

Account No: 4049 8717

BSB: 062948

Account Holder Name: Viraaj Nayak

PayID: 0405286809

USA Account:

priyatam sanyasi kumar nayak

Account number: 8314331886

Ach and wire transferring number :

026073150

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Facebook link for HH Community: Hypothalamic Hamartoma