Rare Disorder Eating Away At 9-Year-Old’s Brain Has Left Him | Milaap

Rare Disorder Eating Away At 9-Year-Old’s Brain Has Left Him In Critical Condition On Ventilator Support

"He is our youngest and only son, a child that we had ardently prayed for. He was growing up to be so smart and energetic. But look at him now. I cannot bear to see my son like this - unconscious and his condition worsening with every passing day. I don't know if he can hear me calling out to him.”-  Sharda Koli, mother

9-year-old Rajvardhan Koli is in a critical condition in the ICU. A rare neurological disorder called acute disseminated encephalomyelitis is damaging and causing inflammation in his brain and central nervous system. He is not able to breathe on his own and is on ventilator support. Without continued ICU care for a few more days, his condition can worsen further and even kill him. This is what his parents fear most as they have no means to continue his treatment.

‘He was in a coma for more than two weeks’

It all started to fall apart when a few days ago, little Rajvardhan started experiencing chest pains. It was like a pinch in his chest at first, but then it got worse. His oxygen levels dropped below 70. He had to be rushed to a hospital in the big city from his village, because his body was on the verge of complete collapse. The oxygen supply to his brain was being cut off due to this rare disorder, and causing cell damage.


"He was in a coma for 18 days. Doctors did not know for sure if he would even wake up. But my Raj is a fighter. He opened his eyes on the 19th day, and we thanked God for it. But he is still not out of danger.”- Balku Koli, father

‘My crops are failing on one side, and my son is very ill on the other’

Rajvardhan's father, Balku, is a farmer who used to feed his family by growing some crops on a small piece of land. He would have to work all day to make just enough so that his family – including his wife, two elder daughters and Rajvardhan – does not starve. But ever since Rajvardhan has been hospitalised, Balku has not been able to work. His crops have failed as a result, and he is left with no money to pay off the piling hospital bills.

"My son needs me. But mentally and financially, I am completely drained. I have tried begging everyone I know, and they have helped me to some extent. But they too are poor, and I am already in debt. I cannot repay them, nor can I borrow any more money. Unless he has completely recovered, I will not be able to take my son back home. Please help my child. Please." – Balku


Click here to save Rajvardhan before his condition worsens further. He needs your help urgently.
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Patient rajvardhan Balku Koli is 5 years old, living in Kolhapur, Maharashtra
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Being treated in Aster Aadhar Hospital, Kolhapur

Receiving treatment for Demyelinating Disease

Click here to know more about rajvardhan Balku Koli
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