Love, support, wishes and care are needed for the rare

I have a rare disease called VHL or Von-Hippel Lindau--this gene is a tumor or cancer-suppressing gene present in every human being and those people who have VHL disease have a mutation, turning them into a tumor producing factory.

I don't think I have to explain mutation because the virus causing the pandemic is also composed of genetic material and it is mutating constantly.

In my case, blood-filled tumors form in up to 10 organs of the body. The only treatment is the removal of tumors, irradiation, and monitoring but unfortunately, multiple tumors formed in the liver which compressed and displaced vital vessels and I had a liver transplant leading to turning off of the immune system.

Soon after this life turning event my father perished leaving us penniless and homeless but God sent his messengers and I survived kidney cancer, and other brain tumors.

I happened to get the rarest brain tumor in the world known as leptomeningeal hemangioblastomas. As per records from 1902-2013 only 132 cases have been reported globally and I may be the first case going for treatment in India.

If you don't have enough knowledge you can't survive such nefarious tumors. 

Once you go for surgery the blood-filled tumors would bleed spreading tumor cells throughout the brain and spine and they, in turn, would travel with the fluid inside the brain which acts as a cushion for the brain. There's also a risk of bacterial meningitis due to the absence of an immune system.

I was told I have 3-6 months in 2013 after diagnosis... if I had gone for surgery but I was clever not to choose surgery.

I used radiation therapy for stopping the growth or mildly shrinking of the tumors.

I had 2 cyberknife and 2 radiation therapy.

But the 2017 radiation therapy went wrong, my ' little grey cells' are working and I became an author, columnist with Times of India but my white matter was damaged.

As I was exposed to a lot of radiation in the brain, the consequences of which are white matter damage leading to Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.

But another thing happened the nerves started getting damaged and then it is assumed that the dislodged have started traveling. 

My 5th nerve has been destroyed. Other nerves too look like they are on the path of destruction. We have 12 cranial nerves right inside the neck region. If the tumors in their journey travel to the nerve controlling the lungs or heart, I will take off from the world bidding adieu to all. I have 3-6 months now to beat the nuisance tumors. I need your help.

The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumor but also the healthy tissue that the beam encounters on its way towards the tumor and beyond the tumor. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.

A proton beam directed at a tumor travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumor.

 I need 40 lakhs for the treatment. I assume you'd help me out. I live with Mum in a rented house. Already my medicines are very costly. I am not afraid of death. Life has to end once you are born but I think of my 68-year-old mother. After her first miscarriage during my birth, there were problems but she wanted me and for 41 years she has cared for me as nobody would. 

Animals care for their offspring for some time and teach them to eat, walk, how to get food or fly. But at one point in time, they leave them to make their way in life but that's why my mother is unique.

"An' why? Because...because I got you to look after me, and you got me to look after you, and that's why." -John Steinbeck

She has no one apart from me. She'll be shattered and I honestly worry about her. Only her care has kept me alive and now the hell will break loose and she won't be able to tolerate it...we have a great bonding... My appeal kindly contribute as little as 5/ because drops of water make an ocean 🙏

As Uncle Bill told our Spidey "With great power comes great responsibility"

Those with power fill up the ocean I need.

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