The State Government should come to the assistance of members of a family suspected to be suffering from a very rare genetic disorder in their remote village in Almora district. The ailing family members should be shifted to the All India Institute of Medical Sciences (AIIMS) in Rishikesh or Delhi by the government, failing which the Congress party should be permitted to provide necessary assistance. The Uttarakhand Pradesh Congress Committee president Kishore Upadhyay said this while addressing the media.
Speaking at a Press conference in the Congress Bhawan on Thursday, the PCC chief said that he had recently visited the Khajuria village in Almora district where the family of the late army man lal Singh Bisht was suffering due to a rare genetic disorder. The village is reached after covering a distance of about 12 kilometres on foot. “Bisht’s daughter in law Janaki Devi is in a very depressed condition. Some time ago her daughter, 17-year old Sarita died from starvation and the disorder. Six months before that lal Singh had succumbed to the disorder. He was the back bone of the family facing very difficult times. Five years before that his daughter lakshmi had also died and before that, his son had also died. His surviving son Arjun Singh Bisht and other family members Diwan Singh Bisht and Harsh Singh Bisht are seriously ill at present,” said Upadhyay.
Eliciting focus on the trouble being experienced by Janaki Devi who is herself not sick but finds herself alone to tend to the family of ailing members, the PCC chief said that the lady was depressed and anxious about whether her surviving daughter Neetu who is studying in class VIII, will remain healthy or also contract the disease. He said, “The mother and daughter are severely depressed facing such difficult conditions. I have also written a letter to chief minister Trivendra Singh Rawat requesting that the ailing family members be shifted to AIIMS in Rishikesh of Delhi- where their rare ailment can be properly diagnosed and treated. A psychiatrist should also be provided to counsel Janaki Devi and her daughter to help them overcome their depression. From what the locals state, it is suspected that the family members are ailing from a rare genetic disorder spinocerebellar ataxia but a DNA test is required to confirm this condition. I have requested the chief minister that the state government should take proper care of the ailing family members and bear the expenses of their treatment. If the state authorities fail to do the needful by April 29, I have also requested the chief minister to allow the Congress party to do the needful for the family,” said the PCC president.