Sayali (13) and Siddhant Kapase (11) were born with a rare genetic disorder that causes abnormal scaling of the skin
Pune: Two siblings in Pune, who have been living with a rare disorder that has their skin resembling a snake, may finally get redemption from the abnormality, thanks to a crowd-funding campaign.
Delhi-based businessman and social worker Gaurav Malhotra, who collected around Rs 2 lakh through the online initiative, recently pumped in the money for their treatment. And, according to doctors, the siblings — Sayali (13) and Siddhant Kapase (11) — are already showing signs of improvement.
Sayali and Siddhant, residents of Nigdi in Pune, suffer from a rare genetic disorder known as Lamellar Ichthyosis. The disorder is characterised by abnormal scaling and shedding of the skin. Children with the disease appear to have scales all over the body.
Their father Santosh (39), who earns Rs 9,000 per month, says that the ever-spiralling medical bills has been a major impediment in providing the children good treatment. “I have already spent around Rs 10 lakh on their medicine and treatment. I even sold my land, but haven’t been able to help them. I am one of the worst fathers in the world. I see my children suffer, but can’t do anything about it,” he said.
According to Santosh, his children’s condition only gets worse during the winter and summer season.
Malhotra learnt about the sibling duo from a mutual friend. “We then started a campaign on various online portals and managed to collect Rs 2 lakh within three months. Over 100 people contributed for their treatment,” he said, adding, “I am also planning to approach the government to help the family.”
The brother and sister are currently undergoing treatment at Dr DY Patil Medical College and Research Centre in Pune.
Dermatologist Dr Ayush Gupta, who is treating the siblings, said, “The children are showing signs of improvement, but we cannot comment on the long-term cure yet.”