Hope floats for ostracised ‘ghost boys’ of Madhya Pradesh village
Brothers Ashfaq and Mushtaq Khan, residents of Vidisha district’s Ramnagar village, suffer from Hypohidrotic Ectodermal Dysplasia. The genetic disease had manifested in four pointy teeth in the boys’ upper jaw, hair peppered with grey, flat noses, dark and cracked skin, and thin and reedy voices.
Brothers Ashfaq and Mushtaq Khan were ostracised all their young life because of the way they looked but they now appear to be on the path to leading a normal life.
A couple of months after HT highlighted their plight, the two Hypohidrotic Ectodermal Dysplasia (HED) patients from Vidisha district’s Ramnagar village have started receiving help from organisations and individuals.
Ten-year-old Ashfaq and seven-year-old Mushtaq are now being treated at Lucknow’s Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGI), which has paved the way for diluting the discrimination they faced from villagers, who had labelled the brothers “ghost boys”.
The genetic disease had manifested in four pointy teeth in the boys’ upper jaw, hair peppered with grey, flat noses, dark and cracked skin, and thin and reedy voices.
“I am a labourer. It was difficult for me to bear travel expenses to go to even Bhopal, which is just 100km away from our village. But people helped us. Now, at least I am aware of the disease my kids have. Their treatment has also started,” the boys’ father, Ajeet Khan, said.
An awareness campaign was also organised to inform the villagers that the two kids were not suffering from a communicable disease. “We organised two seminars for villagers with the help of school teachers. We explained to them about the disease and also that if villagers helped the kids, they could live a normal life,” said Ravi Goyal, executive director of NGO Shaktishali Mahila Sangathan Samiti (SMSS).
The NGO also created a WhatsApp group that has helped bring in donations for the brothers, including ₹30,000 from the 1979 batch of probationary officers of State Bank of India. The grants have helped Khan’s family buy a solar fan and ice box for the brothers, who experience excessive heat because of the HED.
“Now, they spend the whole time in front of the fan. If they feel hot, they cool themselves by spraying water and rubbing ice cubes on their toes,” said the boys’ mother.
Scorned, ridiculed and even pelted with stones till two months ago, the brothers now have friends.
“Earlier kids didn’t play with them but now they spend the whole day with the boys. Drastic change has come in villagers’ behaviour,” said Kaluram Ahirwar, a teacher.