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Afflicted Pune Siblings Who Shed Skin Can Finally Afford Treatment

Thanks to crowdfunding, they have hope now.

16/02/2017 4:02 PM IST | Updated 16/02/2017 5:36 PM IST
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Sayali (13) and Siddhant (11) Kapse of Pune are used to being called names such as 'snakes' and 'witch children'. They are often looked at with curiosity, fear, and sometimes, scorn.

The Kapse siblings suffer from a rare skin condition that makes their skin peel off every 10 days, making them look like they have scales all over their bodies.

They suffer from a genetic condition called Lamellar Ichthyosis.

The condition, which was given up as being practically incurable for all these years, is finally responding to a new treatment that is being offered to the children with the help of an online initiative.

According to Mid-Day, Gaurav Malhotra, a Delhi-based businessman and social worker, has collected over ₹2 lakh for Sayali and Siddhant's treatment after starting a petition drive on the online fundraising platform, Ketto.

Despite earning only ₹9,000 per month, their father, Santosh, has already spent over ₹10 lakh on their treatment. He managed to gather the amount by selling his land and other property.

The children are now being treated at the DY Patil Medical College and Research Centre in Pune and are showing definite signs of improvement. Dr Ayush Gupta, their dermatologist, is optimistic but says that he cannot comment on any long-term cure yet.

In an interview to the Mirror last year, Sayali had said that she felt "disgusted" by her own reflection.

"I wonder why God made my brother and me this way. I aspire to be an accountant but I wonder if anyone would offer me a job with this condition," she had said.

Describing the siblings' struggle, their mother, Sarika Kapse, told the Times of India:

"Ever since her birth, the skin over Sayali's eyelids was stretched so much that she could not close her eyes properly. The scaly patches of skin growing over the scalp had stretched the eyelid so much that it had stuck to the eyebrows which made it difficult for her to close her eyes. Only the inner white portion inside the pupils will come over the eyeballs during sleep. Until she turned six years old, she did not sleep with her eyes properly closed. She suffers from low vision in both eyes due to this."

Santosh Kapse feels heartbroken and helpless every time he sees his children in pain. "I am one of the worst fathers in the world," he told Mid-Day. "I see my children suffer, but can't do anything about it."

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