Abandoned by India, Sangli trio catch Russia's attention

Anita Raut, 59 yells at her daughters for disturbing the two bags set on each other in corner of their two-room home at Kavthe Ekhand village of Maharashtra’s Sangli district. “I don’t know how to stop them. They are so excited about going to Russia,” says she.

Savita, 24, Manisha, 19, and Savitri, 16 rarely go out of the village and except for accompanying their mother to fields to work as farm labourers and help with running the home they avoid stepping out of their home for fear of being ridiculed. “Every time we step out a crowd gathers and people make nasty comments so we only step out with our mother,” says the eldest Savita who says the trip to Russia, this week seems like a dream. “Only when we land there will I believe it is true.”

Of Anita’s six daughters, three suffer from hypertrichosis lanuginosa universalis. This means that they have excessive body hair which covers most of their faces too. This has led to them shamed, shunned or “treated like a freak-show.”

Anita remembers how her husband too suffered from the same condition. “As a boy it must have been easier on him than it is for my girls,” she says and recounts, “I was an orphan and lived with my maternal uncle who married me off when I was barely 16. I had no say or didn’t even realise I was being married to a man like this,” she recounts. Her husband Sambhaji died in 2007 but anger overcomes her when she speaks of him. “He’s gone and left me to fend for his daughters.”

The trio have not studied beyond Std X. “We learnt to live with jeers and pursued schooling till Std X but studying further would mean going to Sangli town by bus so we haven’t,” says Savita. In fact when she completed her Std Xth, the SSC board exam centre was in a nearby village. “I went to the bus stop and got into the bus but a huge crowd gathered. I somehow got off and ran all the way home. My parents are illiterate. I dreamt of studying at least till Std XII and getting a job but because of my looks, instead of helping out I’ve become a burden on my mother.”

Her younger sisters have appeared for SSC since the centre was in the village itself. The youngest, Savitri passed this year. Her eyes sparkle when she tells us her favourite subject is Science. “I would like to become a doctor but because it will be expensive and our condition I hope to become a nurse someday.”

Russian state-run television channel Rossiya 1 has offered to pay for their travel and treatment at Moscow’s Institute for Plastic Surgery & Cosmetology around February through Mansoor Chetlu of the New Life Foundation a Bangalore-based NGO which is liasing with the family. According to Cheltu, the channel wants to document their entire trip and treatment, which will be presented in a special show. While he called Rossiya 1’s effort humanitarian, Anita doesn’t seem so sure. When asked about the girls’ discomfort of being on camera, she said, “See they are spending nearly Rs2 lakh on our travel and stay and giving us Rs1 lakh. Will they not want something in return? Anyways I can’t either marry these girls or do anything for them. If this is going to help us, why not?”

We ask Anita if she’s tried approaching anybody in the government for help and she gets exasperated. “How many times I’ve fallen at the feet of various officials and leaders? Even Aaba (as local MLA and home minister RR Patil is called here), simply keeps promising us land, employment and financial help everytime he is in our village. Nothing has materialised over the last ten years of pleading with him and repeatedly giving him papers and photographs he keeps asking for.” Incidentally Patil’s own village Tasgaon is barely ten kms away from Kavthe-Ekhand.

A spokesperson for Rossiya 1 who spoke to DNA on phone confirmed that the family would be flying to Moscow in the next few days. “They did not have passports and this took time. Now that the visas are almost in place we are eagerly awaiting their arrival,” she said, but declined to comment on the special show that Raut sisters will be part of. 

When DNA spoke to specialists in the city they admitted that there is little research to help treat this rare one-in-a billon disorder.  Endocrinologist Dr Deepak Chaturvedi said, “A hormonal treatment will not be expensive but cannot guarantee a full and complete cure. Also cosmetic treatment costs lakhs depending on the extent of hair and is a recurrent cost,” and added, “A better intervention strategy is for working with the patient and her or his family so that they learn to live with this non life-threatening condition. Only prolonged counselling and therapy can help the family come to terms with the social effects.”