Pankaj Rana, 22, spends his time crawling across the room in which he has been kept chained ever since he was born.
Suffering from quadriparesis, a disease which renders limbs immobile as well as aphasia which affects the comprehension of speech, Rana is living a life which many would term as worse than death.
His mother, a widow, says that she cannot take her son to the hospital for treatment as she doesn't have enough money which is why she keeps him tied inside her small house in Saunda village located in Jakholi block of Rudraprayag district.
"I have no other option but to tie up my son else he will crawl into the open and may be attacked by an animal. Leopard attacks are quite frequent and I fear for his safety," said Saroj Rana, the youth's mother.
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Saroj's husband Dinesh Rana who worked as a cook in Delhi passed away almost eight years ago. Since then, she has had to fend for her three sons including Pankaj and forced to take up a labourer's job. "Initially we couldn't understand what was wrong with Pankaj. Along with his father, I took him to almost all the temples in our area and showed him to all the health centres but no one could do anything for him. Perhaps he was destined to be roped."
Although Saroj is eligible for a widow pension of Rs 800 per month, she says that she has not received the amount for the past six months. The family currently subsides on her meagre earnings as a labourer and the specially-abled pension of Rs 1000 that Pankaj gets.
She says she now wants to highlight the plight of her son and that of children like him ¡ª whose condition will deteriorate further if they don't get proper health care ¡ª to the Prime Minister. "The PM came to nearby Kedarnath a few days ago and said he will come again. I wish that during his next visit, he sees the condition in which poor children who are ill are forced to live in dev bhoomi. At least, the government can set up rehabilitation centres in all parts of the hills for such children rather than asking us to travel to the plains all the time which people like me cannot afford."
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Pankaj Rana's case according to medical experts is representative of the plight of many children who are born in the hills in the traditional way at homes. Quite a few of these children are born with birth defects. According to Dr Saroj Naithani, chief medical officer of Rudraprayag district,who is providing financial assistance of around Rs 2000 per month to Saroj's family, children like Pankaj who are facing severe birth trauma cannot be just left to suffer. "We need a strong long-term rehabilitation plan for such children," she said.
The latest sample registration survey (SRS) indicates that while institutional deliveries (at hospitals) have increased in Uttarakhand, there are still 37% births happening at homes which are contributing to factors leading to handicapped children. Even though the state government is running the Rashtriya Bal Swasthya Karyakaram (RBSK) for such children who are born with birth defects, often poverty and geographical constraints (travelling distance) stop parents from ensuring that such children get proper care and treatment.