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Literary Openings, Gadgets and News in Nigeria | Duketundesblog: Agony of a poor Indian Family who gave birth to Kids with rare skin conditions

Tuesday, 2 February 2016

Agony of a poor Indian Family who gave birth to Kids with rare skin conditions

A rare skin condition that leaves a brother and sister in India looking like they're in their 80's have left their poor parent baffled and at the same time dejected.

7-year-old, Anjali Kumari, and her 18-months-old brother Keshav Kumar, have wrinkled skin, suffer pain in their joints and swollen faces.
But their parents, Shatrughan Rajak, 40 and wife Rinki Devi, 35, from Ranchi, in Jharkhand, eastern India, and oldest daughter Shilpi, 11, do not suffer from the disease.

While the siblings are teased for their looks and are often stared at on the streets they dream of a cure; but doctors in India believe they suffer from a form of Progeria as well as a disease called Cutis Laxa and claim there is no treatment.

Father Shatrughan, a laundry man earning 4,500 Rupees a month (£45), said: ‘We dream there is a cure for my children.

People in our community call them ‘old’ and it’s heartbreaking. We’ve tried to get help from our local doctors but they have told us our only hope is from overseas.’

After Rinki gave birth to her first daughter Shilpi, who was normal, they were quick to build their family, but when their second daughter Anjali was just six months old she was rushed to hospital with pneumonia.

‘After she recovered from pneumonia the moisture in her body just seemed to dry up and her skin loosened,’ added Shatrughan.

‘We took her back to our doctor at a government hospital but they said there’s no cure for her and her life was in the lord’s hand.

They added they will let me know if there’s a cure but I never heard from them again. Ever since she’s aged very quickly.’

But five years later Shatrughan and Rinki decided to have another child, a boy Keshav was born, and in time they noticed he too suffered the same condition as his sister.

‘We haven’t taken Keshav to any doctor because we know he has the same as his sister,’ Shatrughan said.

‘We’re a poor family and doctor visits are expensive. They couldn’t do anything for Anjali so we knew they couldn’t do anything for Keshav either.’

Anjali already experiences ailments usually suffered by pensioners. Her joints hurt, she has breathing issues, her skin is sagging and her eye sight is poor. And due to her low immunity she picks up illnesses quickly.

While Anjali goes to school and is very aware of her unusual condition, Keshav is too young to notice.

Little Anjali, who dreams of being an engineer and building big houses, said: ‘I know I’m different from others my age. I have a different kind of face, a different body, different everything. I have a swollen face while the rest of the world looks normal. People always stare at me and pass bad comments.

'The children in school call me names like daadi Amma (grandmother), budhiya (old lady), bandariya (monkey), or hanuman (a Hindu monkey lord) and it annoys me. I want to be treated like a normal kid and I want to be accepted for who I am.

’I really wish I could look as pretty as my sister. My parents hope that I will be okay one day but it makes me feel sad that my family suffer and feel embarrassed because of me. My only wish is for a cure. I want to live a long pain free life.’

Older sister Shilpi, 11, is very protective of her ageing sister and brother, and said: ‘I hate it when people tease them.

'I get very upset but there’s nothing I can say, what do I say back to these cruel kids? I will be here for them forever but I just wish them the best education so that they are never dependent on anyone for anything as they grow up. I will teach them to be strong.’

Mother Rinki, 35, said: ‘I massage Anjali’s legs all the time, she’s always in pain. It breaks my heart to see my kids this way. Anjali keeps asking when will she be like her sister. She’s very much aware and is affected by her appearance.’

Shatrughan spends over 500 Rupees (£5) a month on homeopathic treatment for Anjali and Keshav but it doesn’t seem to be having much affect.

‘I can just about afford homeopathic medicines which I hope eases their ailments but I just can’t afford allopathic medicines,’ he added.

‘I just hope someone can give us some answers. I am helpless. I feel very sad that I do not know what to do to help my children. I see them ageing faster than me and there is nothing I can do about it. It breaks my heart. I am praying for a miracle.’

Dr Kailash Prasad, a child specialist at a government hospital in Ranchi examined the siblings and said: ‘This looks like a genetic disease and most likely to be Progeria.

'The other possibility is Cutis Laxa. The complications in the two are more or less the same. It is an extremely rare disorder.

‘They’re stable as of now but they’re very prone to issues due to their low immunity. The old age symptoms have already started and the risk of heart attack, chest infections, arthritis and so on is growing in them which usually comes in old age for a normal person’.

Professor Ted Brown, Geneticist Director at NYS Institute for Basic Research in Developmental Disabilities, in New York, is an expert in developmental disabilities and often assists the Progeria Research Foundation.

He said: 'I would suggest (these siblings) may have a form of Cutis Laxa which has some resemblance to Progeria or premature ageing.'

Source: DailyMail

1 comment:

  1. This is more like the curious case of Benjamin Button. I hope they grow younger as they get older. I feel for these little children.

    Mily's blog


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