MP’s ‘ghost boys’ trudge towards a normal life
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 100 kms 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,” Ashfaq and Mushtaq’s 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 these kids, they could also live a normal life,” said Ravi Goyal, the 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 whole time in front of the fan. If they feel more heat they cool themselves by spraying water and rubbing ice cubes on their toes,” said the boys’ mother Abila Bi.
Scorned, ridiculed and even pelted with stones till two months ago, the brothers now have several friends. “Earlier kids didn’t play with them but now they spend whole day with Ashfaq and Mushtaq. Drastic change has come in the behaviour of villagers, especially children,” said Kaluram Ahirwar, a local teacher.
People from all walks of life, including foreigners, continue to come forward to provide assistance to the brothers.
“Sheena De Boisgelin from Delhi has started giving a monthly amount to the mother of these kids so that she can take care of them. Mary Albardo Stephenms from Hawaii, Laura Locke from Ashaway Rhode Island, have also extended help,” Goyal said.