This nondescript village is among one of the numerous villages which is on the verge of becoming a ‘ghost village’ owing to lack of basic facilities and job options.
The village, which has a population of nearly 100 people, hit the headlines earlier this week after a Bharatiya Janata Party legislator Mahesh Negi in a letter to chief minister Trivendra Singh Rawat claimed that 17-year-old Sarita Bisht of this village had died due to starvation.
For the last four days the village has been witness to movement of officials and politicians promising “every possible help” to the family of the girl.
The district administration and the government have denied that the girl died due to starvation and held responsible a mysterious neuro problem.
Amid claims and counter claims, this correspondent took a day-long journey to know the truth. It is a 10-km treacherous trek into the mountains through rocky terrain, where one has to cross seven-eight rivers and streams and negotiate upwards before entering into the village.
A penchant smell comes from a muddy house that belongs to the Bisht family. Barring mother Janaki and youngest 13-year-old girl Neetu, the remaining three members are also suffering from a neuro disorder - Friedrich’s Ataxia.
Janaki’s two sons Diwan Singh and Har Singh and brother-in-law Arjun are now suffering from this disease which proves to be fatal in the long run and does not have a cure.
Janaki’s sons present a pathetic picture due to the stench from their clothes on account of not bathing. Their body is covered by flies due to the faeces and dirt that sometimes clings to their clothes as they sometimes tend to defecate on the spot where they sit as body movement is difficult.
“You can keep giving them (boys) food and they will keep eating” Janaki says with sadness in her eyes.
The mother cooks food in the morning for the family and feeds the boys. After that she has to go out to work in the fields, tend to the cows and work as a labourer under the Mahatma Gandhi National Employment Guarantee Scheme (MGNREGS), due to which the children are left alone and no one cares for them.
On being asked whether her daughter Sarita died of starvation on April 15, Janki does not give a definite answer.
“We had grains at home, but I am the only person responsible for the care of the family and cannot cook all the time. Sarita had been completely bedridden for the past two months and could not move an inch and was defecating on the bed. I had no way to care for them all the time as I have to go to the fields and work for livehlihood,” she said.
Sarita’s grandfather Lal Singh died last year. Lal Singh’s daughter also died due to the same disease three months ago. Though Lal Singh did not show any symptoms of the disease, his son Khushal Singh who is Sarita’s father is also suspected to have died from the same disease last year.
Recently, Janki Devi’s brother-in-law Arjun who used to work as a truck driver in Delhi started showing the same symptoms and returned to the village.
The Disease: Frieidreich’s Ataxia
Deputy chief medical officer Almora district Yogesh Purohit visited the family to assess the condition of the boys of the Bisht family. He said the “mysterious” gluttony and neuro muscular disorder was diagnosed as Neuro Motor Impairment or Frieidreich’s Ataxia by the specialists at the Himalayan Institute Hospital Trust (HIHT), Dehradun in 2014.
- The disease is named after German physician Nikolaus Friedreich who identified it in the 1860s.
- A hereditary disease, it causes progressive damage to the nervous system.
- It is characterised by stumbling, change in gait, falling, slurring of speech and inability to move and fatigue.
- It also leads to thinning of the spinal cord and partial loss of the myelin sheath that transmits nerve impulses.
- Around 20% of patients develop glucose intolerance or diabetes leading to immense hunger.
- The incidence of this disease in the United States is 1 in 50,000 persons, but the number of those suffering in India is not known.
According to the doctor, the boys were examined under the National Child Health Programme in their village in 2014 and then sent to the Almora government hospital.
They were also sent to the HIHT in March, May and August, 2014 where a panel of specialists declared that they were suffering from Neuro Motor Impairment or Friedreich’s Ataxia.
The disease was brought to light by German Physician Nikolaus Friedreich in 1860s and has been named after him.
The disease is charecterised by stumbling, change in gait, falling, slurring of speech and inability to move with fatigue.
It leads to thinning of the spinal cord and partial loss of the Myline sheath that transmits nerve impulses.
Around 20%of the patients develop glucose intolerance or diabetes leading to immense hunger.
The economic status of the Bisht family is abysmal. Janki Devi’s father-in-law Lal Singh Bisht was a former soldier who used to get pension from the Indian army, which has not been stopped after his death.
She receives Rs 1,000 per month as widow pension.
After Sarita’s death, the district administration approved Rs 1,000 per month handicapped pension for the eldest son and Rs 500 handicapped allowance for the younger son who is a minor.
The total pension amount for the family would increase to Rs 3,000 per month after two years when the younger son turns 18.
The boys’ uncle, Arjun Singh, will also be given handicapped pension of Rs 1,000 per month.