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This 6-Year-Old's Rare Disease Might Stop His Brain From Functioning

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“Whenever I talk to him or call his name he hardly responds. I thought he'll slowly pick it up but I was wrong. When doctors explained the problem I was shell-shocked. Now he does not understand even simple instructions. If I repeat any words he starts crying uncontrollably. I am scared that he will never be a normal child again.” Hirakor, Virat’s mother.

Virat suffers from a deadly disease that his parents can hardly understand

Virat was a normal child even a year ago. Being the youngest in the family, he is loved by everyone in his family especially his elder sisters. They can’t imagine their life without him. Suddenly, Virat started having frequent fevers and it made him very weak.

“I was a little scared when my child’s fever became almost an everyday affair. We thought we should get his blood test done. But the reports were totally unexpected. Virat has congenital metachromatic leukodystrophy, a condition which we still understand very little. All I know is that my child will become mentally challenged with time and even die.”

Virat’s brain’s functionality is gradually deteriorating

Virat has one of the rarest metabolic disorders which will retard his mental growth and eventually lead to loss of memory. With his deteriorating condition, he needs an urgent bone marrow transplant without which he won’t live long.

“Virat was a very chirpy kid. Slowly, he is not talking much. He doesn’t understand instructions. He hears but he is unable to process it in his head. He is in a situation when he doesn’t even understand that he has to sit while pooping. He doesn’t understand if he feels hungry. It is difficult to communicate things to him. He sometimes starts crying even without a reason. It is painful to see my child who was perfectly fine even a few months ago, is now suffering mental issues.”

The parents are ready to take every pain so that they don’t lose another child

After losing their 12-year-old son to seizure attacks, it is even more difficult for Hirakor to accept that there are chances she would lose Virat too. For her, seeing her one child die was more than she could handle.

“We have to travel 500 kms every time to take my child to the hospital. Not just it is immensely bone-breaking, but I also have to skip work. Losing even a day’s pay now is scary. I have taken loans from my workplace already. A huge amount of my salary gets deducted in repaying back the loan. Things are getting tougher every day.” Manik, Virat’s father.

Even after having a stable income, the only option Manik has now is to sell his house

Manik earns Rs 30,000 a month. He has loan deduction on his salary. With his salary, he has to run his family and pay for Virat ’s treatment which is huge. He doesn’t have many relatives to even turn back to for help.

“I have already spent Rs 3.5 lakhs on his treatment. To save Virat, the only option we have is a bone marrow transplant. Even after my retirement, I will not have the huge amount of money. I am already in debt and arranging the whopping Rs 36 lakhs seems almost impossible. The last option left is selling off our house, but even that won’t give us such large amount of money. I have no idea how, but I can’t let Virat become more sick and die .”

How you can help

Virat is suffering from one of the rarest diseases which can make him mentally challenged and also take his life away soon without an urgent bone marrow transplant. The cost required to save him now is Rs 36 lakhs. His parents cannot afford the treatment and further delay may even cost his life.

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30th October 2018

Dear Supporters,

Thank you for all your love.

Virat is at home now and doing fine. The doctors had conducted an MRI and we are waiting for the reports for the same. We will be taking him for a check up next month. The doctors will then tell us when the transplant can be scheduled.

They have also been looking for a donor for him from outside. When we go for the check up, they will conduct few tests on me to see if I am a match for him.

Once again, thank you all for your love and support.

Regards,
Manik
(father)

21st September 2018

Dear Supporters,

I am delighted with the love and support blessed on my son Virat.

I would like to inform you that we will be taking him to the hospital at the end of this month so that the doctors can decide when to go ahead with the transplant. Presently, he is at home and doing better. We are treating him with Ayurveda along with the rest of his treatment.

A big thank you to all of you and a humble request to please share the campaign and pray for his good health.

Regards,
Manik

5th September 2018

Dear Supporters,

Thank you for all the love and support that you have shown towards Virat.

Virat is at home, however his condition is still the same. He is undergoing treatment. Virat has an appointment with his doctor in a few days, in which the doctor will decide whether Virat needs to undergo transplant this month or the next month. In order to go ahead with the transplant, it is important that his vitals are stable.

Please continue to support him by sharing the campaign and praying for his good health.

We are grateful for all the love and support you have given him.

Regards,
SRCC Children's Hospital