Gorakhpur (ISJ Exclusive) - When you meet Rinki for the first time, you can easily confuse her to be far younger than her 13 year old self. Dressed in rugged clothes, Rinki comes out drooling, uncombed and unwashed, she barely spoke a word. All she did was to give a smile, a smile so infectious that it lingers long even after she is gone.
Rinki suffered from what is now notorious as Japanese Encephalitis in Manbela in Gorakhpur, at the age of three. Japanese Encephalitis (JE)- a mosquito-borne viral infection which the locals also refer to as the "brain fever". The entire plains of eastern UP has seen the horrors of the disease for the last four decades, Rinki's family is just one them.
Rinki lives in a slum with her two sisters, parents abandoned them long before they could come of age. She survived the wave of Japanese encephalitis in 2008, which killed many infants in her locality. She was lucky, or atleast that's what it was thought. But there was more to it, than meets the eyes.
While still in Hospital, Rinki started developing neurological disorders. This was just the start. She soon lost her eyesight and gradually lost her cognitive abilities. Today, Rinki needs help, care and medical attention. But medical care is a luxury in this village.
"What will the medicines do? She will eventually die and who has the money anyways?" remarks her elder sisters. Living in Manbela, in Gorakhpur, the sisters have little employment opportunities, so they do what they can, they scrounge to survive.
Nearly every house in Manbela village has seen Encephalitis-related death or disability, despite the fact that the village is barely two kilometres away from Baba Raghav Das (BRD) Medical College, the only hospital in the region that has specialised facilities to treat the epidemic.
The hospital made headlines last year when 63 children died within a span of one week due to disruption of oxygen supply by the vendor. Many of these infants were suffering from encephalitis.
Every time the epidemic strikes, the focus is on mortality rate. Survivors rarely claim the limelight. The burden of raising disabled kids is heavy on the families already finding it difficult to make their ends meet. Many children are left to destiny, rather than treatment.
Rinki with her mother
Japanese Encephalitis has killed almost 25,000 kids in Gorakhpur in last four decades. Usually, during monsoons the death toll rises and finds mention in the entire national media. But as soon as the season is over, the news also dies. Forgotten in the tragedy are the children who survived and are now living with lifelong disabilities!
According to government data- over 6,500 survivors have suffered from residual disability following the epidemic. Experts however say, the number could be much higher.
"They only keep records of those discharged from BRD Medical College. Many a times the disease affects kids from the families who have no access to hospital. Also, many parents don't come forward to report," Vivek Kumar, a local social worker says. About 30 percent to 50 percent of the survivors struggle to walk or suffer cognitive disabilities.
Dr RN Singh, a well known paediatrician in Gorakhpur says that the socioeconomic condition and lack of government support makes it near impossible for parents to get their kids treated. He says "I am a doctors and I am not supposed to say this, but I believe that death would have been a better for these kids than lifelong suffering without any treatment."
He is however hopeful the government will someday come up with a policy for the kids crippled by JE. "Most of these children have more than one type of disability. Unless they get support they can't survive for very long. This government has also made the promise to bring policy for them. Let's see if they keep it or not," Dr Singh added.
A few blocks away, lives Savita with her parents. Having lost her vision and mobility partially to Japanese encephalitis at the tender age of 1 year, Savita's parents are working hard to get her the required medical assistance.
Just like Rinki, Savita too has a medical card that qualifies their families for free access to medicines. There is however no drug available with the primary healthcare centres. They show us the card which is all blank. "Everytime we visited the state-run pharmacy to avail our free quota of drugs, the attendant would show us the door. There was no supply, ever," says Lalki, Savita's mother. They had no choice but to buy the medicine from private drug stores.
"It costs us 1000 rupees a month to get her medicines twice a day. If she skips the medicine for two days, she faints. We can't leave her unattended even for an hour" says Lalki. She isn't complaining, but her voice undertones her helplessness.
Gorakhpur is the home turf of Uttar Pradesh Chief Minister Yogi Adityanath. The monsoon rains, lack of drainage and humid atmosphere of the plains provides favourable condition for the virus." During elections, politicians come to us and promise that we will get some help. They take our details, but nothing happens after that," another local says.
Japanese Encephalitis is caused by JE virus carried by Culex mosquitoes which thrive in insanitary surroundings. Acute Encephalitis Syndrome, which includes JE , is a group of clinically similar neurologic disorders caused by several different germs and parasites. The state government is not adequately aware of the matter.
Cases of JE/AES showing signs of permanent residual disability at discharge should receive certificates before leaving the hospital. There is however no system of follow up to identify and provide due support to those who show signs of disability.
Both Rinki and Savita are specially-abled children who survived the encephalitis, only to endure life-time suffering. The only difference perhaps is, Savita's parents are hopeful. They are trying to give her a life she deserves. Rinki's sisters, on the other hand, are waiting for her to succumb to her medical condition. Manbela today has been reduced to a valley of disabled kids, the stark reality hits you like a cold breeze on a winter morning by the time you reach the tenth house.
Image courtesy: Vivek Kumar